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FREQUENTLY ASKED QUESTIONS

Getting Involved

Donations

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How do I contact the Foundation about a donation?

 

Thank you for your generosity in supporting our fight against Parkinson's disease. If you have questions about how to help, please contact us during business hours (Monday through Friday, 9 a.m. to 6 p.m. EST) by phone at (800) 708-7644 or via email to donations@michaeljfox.org. If you call or email outside of business hours, please leave a message and we will respond the next business day.

I want to make a credit card gift but I don't like submitting the information over the Web.

 

Although donating online is a fast and secure way to make a gift, there are several alternatives available. You can print out the Downloadable Donation Forms (PDF), fill out all information, and mail or fax it to us at (212) 509-2390. You can also call us at (800) 708-7644 and we'll take your credit card information over the phone. Or, you can mail your check to us.

Is my credit card information secure?

 

The Michael J. Fox Foundation takes every precaution to protect our donors' information. When you submit sensitive information via the Web site, your information is protected both online and offline. We use the industry standard security protocol to communicate with your browser software, which makes it extremely difficult for anyone else to intercept the credit card information you send to us. Independent audits are also conducted on our practices to ensure the privacy, security and appropriate processing of your information on our site. In addition, we work to accurately process your contribution information.

My donation didn't go through. Why?

 

If you received an error message after completing your transaction, it is likely that the information provided, such as the credit card identification number, did not match exactly with what is on file at your bank. For further assistance, contact us at (800) 708-7644, or email donations@michaeljfox.org.

How can I find out more about the research my donation is supporting?

 

To learn more about the research we are funding, please visit Our Role and Impact page. You can also view our Portfolio of Funded Grants.

Can I make a recurring credit card donations?

 

Recurring gifts are a wonderful way to support the Foundation's vital work. Please see our Make a Donation page, contact us at (800) 708-7644 or email donations@michaeljfox.org and we will assist you.

What percentage of my donation goes to Parkinson's research?

 

The Michael J. Fox Foundation strives to make every dollar count as we seek a cure for Parkinson's disease. We keep a sharp eye on expenses. From inception, 88 cents of every dollar we've raised has gone to research-related activity. The Foundation does not stockpile funds in an endowment, choosing instead to identify the most promising Parkinson's disease research worldwide and commit resources to it as fast as possible.

Can I make a donation in honor or memory of someone?

 

Yes. For more information about this process, please visit our Honor and Memory Gifts page. The Michael J. Fox Foundation will mail an acknowledgment card to your designated recipient or recipients, informing them of your donation (the amount of the gift is not included). You will receive a gift receipt for income tax purposes.

I can't find my receipt. Can I have another one?

 

We can send you a copy of your receipt. Please call us at (800) 708-7644 or email donations@michaeljfox.org with your full name as it appeared on your donation, your address, the date you made the donation and the amount. Please include a phone number or email address so we can get in touch with you if we need to.

Does the Foundation sell, rent or trade donor information (e.g., mailing and e-mail addresses and phone numbers) to other agencies?

 

The privacy of our donors is very important to us and we do not share or sell this information.

I donated several weeks ago. Why haven't I received a receipt?

 

This is not normally the case, so please call us at (800) 708-7644 or email donations@michaeljfox.org with as much information as possible about your donation. It's possible we had an incorrect address for you, so when you call or write, tell us your full name as it appeared on your donation, your address, the date you made the donation and the amount. It is also helpful if we know how you made the donation: check, credit card, online, etc. And please include your phone number or email address so we can respond as quickly as possible.

Does The Michael J. Fox Foundation issue tax receipts?

 

Yes, The Michael J. Fox Foundation is a 501(c)3 nonprofit, tax-exempt organization designated by the Internal Revenue Code. When you contribute over $5 to the Foundation, you will receive a charitable tax receipt for income tax purposes. Our tax ID number is 13-4141945. For all other donations, your canceled check or credit card statement can serve as record of your donation.

You can expect your receipt for your donation within one to three weeks from the date you send it in. If you make your gift online, your receipt will be emailed to you.

If you are making a recurring donation through your credit card, your contribution will be charged automatically on the day and the frequency you have selected. You will receive an annual statement summarizing your gifts to the Foundation (either electronic or hard copy), and your credit card statements serve as additional record of your contribution.

I made a donation online (or a memorial/tribute gift) and now I have questions about it. Whom can I call?

 

Please call us at (800) 708-7644, or email donations@michaeljfox.org.

I made a one-time donation but it shows as a "recurring donation" on my bank statement.

 

This can sometimes occur as a result of how our donation system is configured. It does not affect your actual donation and you will not be charged more than once. You can confirm that your donation is one-time by accessing your profile's Service Center and viewing your donation history. If you have any questions, email us.

Clinical Trial Participation

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Are there trials that do not require a visit to the trial site?

 

Clinical trials vary in flexibility regarding where certain evaluations or tests can be administered. Most trials will require at least one in-person visit; however that is not always the case. Trial teams can provide more information about how many visits are required and the frequency of visits.

Some clinical trials may take the form of surveys, typically completed online, that do not require a physical visit to a site.

Why is it so important that more people volunteer for trials?

 

Clinical trials and studies play a critical role in the development of new and better therapies. Yet under-enrollment in trials is one of the greatest challenges clinical researchers face. Under-enrollment in trials slows research progress and deters potential funders from investing in research — and we all pay the price in terms of higher costs and longer time horizons to get to therapeutic breakthroughs. Across all diseases, 85 percent of clinical trials finish late due to difficulties enrolling participants and nearly one-third of trials fail to recruit a single subject and cannot ever begin. According to a 2011 ORC Poll commissioned by The Michael J. Fox Foundation, only one in 10 people with Parkinson's participates in trials.

In spite of this low participation rate, we know that the Parkinson’s community has a significant interest in stepping up to participate in research. The same Harris Poll found that over 85% of PD patients are at least somewhat interested in participating in a trial. Patients site not knowing about specific trial opportunities in their area that need someone like them as the greatest barrier to trial participation.

Fox Trial Finder is one solution to help patients and their loved ones act on the intention to get involved in research by making it easier to find trials that are right for them— and letting volunteers know when new trials start that could be a good match.

What types of volunteers do clinical trials need?

 

Clinical trials need volunteers of all different types, including those without PD. Researchers design clinical studies with certain eligibility criteria in mind based on the hypothesis they are testing in the trial. These criteria establish a set of guidelines for who can participate in a trial and outline the characteristics qualified volunteers must possess (e.g., age, gender, particular symptoms).

At times, both interventional and observational studies also seek control volunteers who do not have Parkinson's disease. Having a control group in a study allows researchers to compare a drug’s effect or a natural change in people with PD to individuals without PD to determine the difference.

For study results to be statistically significant, researchers must ensure that their volunteer group is large enough and includes those most appropriate for the study.

How do volunteers get involved in clinical trials for Parkinson's disease?

 

To get started, interested volunteers can create a profile on Fox Trial Finder. Volunteers can then anonymously reach out to a member of a trial team through the Contact Trial Team messaging feature on the site for a trial they are interested in. Trial teams can answer any questions about the trial and help determine if the trial is the right fit.

Trial team contact information is also provided on Fox Trial Finder, enabling volunteers to call or email to discuss their interest in the trial or specific questions. Trial teams are accustomed to spending time with volunteers to help them make decisions about trial participation, as they know that there are many details to consider before making an informed decision about participating.

Before enrolling in a trial, volunteers may want to discuss trial participation with others, including family, friends, doctors, specialists or even local support group members who have participated in trials.

 

What do the different trial phases mean?

 

The U.S. Food and Drug Administration (FDA) and its corollary agencies abroad require that clinical trials be conducted in a series of phases:

  • Phase I trials test a potential therapy, procedure or drug for the first time in human beings. The most important goal at Phase I is to establish that a potential new treatment is safe for humans, typically in groups of 10-80.
  • Phase II trials more comprehensively evaluate a treatment’s safety and effectiveness in a larger group of participants (usually 100 to 300).
  • Phase III trials confirm a therapy’s effectiveness, monitor side effects and compare it against the current standard treatments in a large group of people (around 1,000 to 3,000). Phase III trials last longer, are usually conducted at multiple centers and evaluate whether a treatment will benefit people with Parkinson’s — and if the benefits associated with a therapy outweigh the risks.
  • Phase IV trials are conducted after a treatment has received FDA approval and been brought to market. These trials help further evaluate long-term side effects and potential new uses for other conditions.

Why are clinical trials essential to the drug development process?

 

The process of developing new drugs is long, expensive and arduous. Unfortunately, a drug is more likely to fail than to succeed at any given stage. The “graduation” of a potential Parkinson’s drug to clinical testing is in itself cause for cautious celebration. This is because clinical testing is initiated only after therapies have already beaten the odds multiple times by moving successfully through years (and millions of dollars of investment) of chemical and biological studies, first in test tubes and Petri dishes, later in pre-clinical models.

The U.S. FDA, and its corollary agencies abroad, requires that a potential therapy’s safety and efficacy be tested extensively in a large group of human volunteers before it can receive approval to be manufactured and made available to patients. Yet clinical testing can — and often does — fail because not enough people volunteer. Without sufficient numbers of trial participants, the drug development process stalls and a trial must be repeated, scaled back or, even worse, the potential new therapy is abandoned. This lengthens the time it takes for new treatments to come to market. No amount of funding or other resources can compensate for the lack of clinical research volunteers. That’s why volunteers can play a truly unique role at this pivotal stage of drug development, which is crucial for new treatments to reach pharmacy shelves.

Can volunteers leave a clinical trial after joining?

 

Yes. Although ideally all study participants remain enrolled until the study's completion, circumstances, disease progression and other factors may contribute to a volunteer’s decision to leave a trial. This is permissible at any time. To withdraw from a study, a volunteer should immediately inform the trial coordinator of this decision and will need to follow specific protocols to officially withdraw.

Can volunteers be compensated for participating in a clinical trial?

 

Due to ethical and practical considerations, every trial has its own policy regarding volunteer compensation. Some trials may reimburse volunteers for expenses related to their participation or even offer some compensation to volunteers for participating. Some trials that require significant travel or an overnight stay may cover the associated expenses. A trial team member can provide more details on whether compensation is available as part of trial participation.

What is a clinical trial?

 

Clinical trials (also referred to as clinical studies or more broadly as clinical research) are research studies involving human volunteers. The U.S. FDA, and its corollary agencies abroad, requires that a potential therapy be tested extensively in a large group of human volunteers before it can receive approval to be manufactured and made available to patients.

All trials and studies on Fox Trial Finder relate to Parkinson’s disease. These trials assess the safety and effectiveness of new ways to diagnose, prevent, or treat PD; they also provide insight about the disease process, and how it might be treated. Clinical trials are a vital part of the scientific research process and are essential to developing better treatments for people with Parkinson’s.

What happens when a trial is over?

 

Once a clinical trial is over, the trial team assesses the data, distills key findings, publishes or presents any novel findings and determines the appropriate next steps for future testing, as appropriate. They may continue to evaluate the treatment in the next trial or discontinue research because the treatment has not been shown to be safe or effective. In some cases, if the treatment continues to the next phase, trial participants will be given the option of participating in that phase of the study as well.

The FDA requires that trial results be published in a scientific or medical journal and made available to the public within 12 months of the last participant’s visit. However, because it is hard for the FDA to track and enforce these regulations, it can be difficult to learn about trial results. Volunteers can search the Web or follow up with the trial team to inquire about study outcomes.

What types of trials are there?

 

There are two main types of clinical trials:  

Observational clinical trials do not test drugs or treatments. Researchers observe participants by monitoring their health over a period of time. These studies provide researchers with data that advances our understanding of Parkinson’s and how to treat the disease.

Interventional clinical trials test the safety and effectiveness of a candidate drug, therapy or experimental treatment.

 

How are volunteer rights and my safety protected in a trial?

 

Every trial follows an extensive and carefully monitored protocol subject to federal regulations, many of which focus on the safety of the participants in a trial. The protocol is a detailed plan that describes the study process. In addition to the protocol, each study has a consent form (also sometimes referred to as informed consent or consent to participate) that volunteers must read and sign before joining the study. The consent form will explain rights and responsibilities of a volunteer and what to expect during the study. Study protocols and consent forms must be reviewed and approved by a regulatory body before any volunteers can be approached about or recruited into a study to ensure that the study is safe, ethical and appropriate.

Trial team members will discuss the consent form and any aspects of the protocol in detail during a trial screening visit. Volunteers can also request a copy of the consent form to review it in advance of this in-person visit.

Biomarkers and PPMI

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Has The Michael J. Fox Foundation worked on biomarkers before?

 

Yes. With investments of over $54 million to date, The Michael J. Fox Foundation has spent years searching for a Parkinson’s disease biomarker. As we embark on PPMI, we believe more strongly than ever that the discovery of Parkinson’s disease biomarkers is a high-impact use of our intellectual and financial resources — and that this study will pay dividends toward better treatments and a cure.

Do other diseases have biomarkers?

 

Some do, but most don’t, and the lack of biomarkers is a particular problem for neurodegenerative diseases (such as Alzheimer’s and ALS in addition to Parkinson’s disease). You may have heard of a study called the Alzheimer’s Disease Neuroimaging Initiative (ADNI). Launched in 2004, ADNI has made important strides toward discovering biomarkers of Alzheimer’s disease and has reinvigorated research focused on disease-modifying treatments for AD. We anticipate similar outcomes for Parkinson’s from PPMI.

In the absence of a PD biomarker, how have there been clinical trials of disease-modifying treatments at all?

 

Most trials use some form of clinical measure, such as the Unified Parkinson’s Disease Rating Scale (UPDRS), to determine whether a treatment is working. However, given the subjectivity and variance in clinical measures, and because symptoms of Parkinson’s disease are affected by the medications and therapies patients have already used, it is difficult or impossible to measure disease-modifying effects in this way. This may have contributed to a history of inconclusive results from trials of disease-modifying treatments in particular.

What are some specific ways that Parkinson’s patients are affected by the lack of biomarkers?

 

There is no way to identify people at risk for Parkinson’s disease or to establish strategies for Parkinson’s disease prevention. It is an often-stated reality that by the time the first symptoms of Parkinson’s disease become evident, as many as 60-70 percent of an individual’s dopamine neurons may already have died. A diagnostic marker would allow us to earlier identify people at risk for Parkinson’s disease. Diagnosis is subjective, based on observing symptoms and rating them on a clinical scale. This translates to a high rate of misdiagnosis, especially among general practice physicians and neurologists who do not specialize in movement disorders.

Parkinson’s disease clinical trials are frequently and frustratingly inconclusive. Why?

  • With no diagnostic marker, an estimated 10 percent of Parkinson’s disease trial enrollees unwittingly do not have Parkinson’s disease, confounding results.
  • With no progression marker to track the disease, there is no way objectively to measure treatment effects.

These factors make Parkinson’s disease trials highly risky for drugmakers and prolong the wait for next-generation Parkinson’s disease therapies.

I thought a biomarker was basically a gene — and don’t we know the genes that play a role in PD?

 

No — in fact, a biomarker is not the same thing as a gene or genetic mutation. Remember, it’s possible to have one or more genetic irregularities linked to Parkinson’s disease, but never get the disease. Genetic research leads scientists to certain biomarker candidates, but many other physical and cellular characteristics are valid as possible biomarkers if they are measurable and provide an accurate window into disease presence or progression. Here are the major avenues of pursuit today:

  • Imaging-based markers (such as PET/SPECT) can provide indirect measures of dopamine neuron function, but do not have sufficient resolution to measure actual cell numbers. More sensitive neuroimaging markers for Parkinson’s disease, capable of measuring dopamine function in the brain, are also under development. These include DATscan (already approved for clinical use in Europe) and other ways to measure dopamine activity. These dopamine-based markers may provide a way to monitor the disease in its earliest stages. MRI and ultrasound markers are also in development.
  • Biological markers in blood, urine, cerebral spinal fluid or tissue biopsies can serve as “signatures” of the disease. These can include genetic, protein or other chemical and molecular signposts. Leading biological marker candidates include measures of antioxidants such as urate, or measures of proteins produced by Parkinson’s disease-implicated genes such as alpha-synuclein and DJ-1.
  • Clinical measures such as tests of motor ability or the presence of disease-associated symptoms such as loss of the sense of smell, sleep disorders, constipation or early speech problems can be good markers. Though not necessarily Parkinson’s-specific, they may still provide a means for detecting early stages of Parkinson’s disease or tracking disease progression. The downside is that clinical measures are subjective, variable over time, and very sensitive to symptom-masking effects of drugs, limiting their utility to measure disease-modifying effects sought in neuroprotective trials.

Overall, it is likely that we need to develop a combination of markers (imaging, biologics and clinical) and measure them in the same individuals over time to identify useful biomarkers for Parkinson’s disease. The Foundation’s PPMI study is designed to achieve just this.

What are the biomarkers of Parkinson’s disease?

 

Unfortunately, no practical, definitive biomarkers of Parkinson’s disease have yet been identified. There are a few markers used in advanced neuroimaging techniques (approved for clinical use in Europe but not yet in the United States) that can help clinicians diagnose Parkinson’s disease in its earliest stages. But no widely and easily applicable, affordable diagnostic markers, and no progression markers whatsoever, have been conclusively validated.

What is a biomarker?

 

progression biomarker (or progression marker) can be any objectively measurable characteristic that changes over time in a way that can be correlated to the progression of disease. This type of marker is a critically needed tool for successful clinical trials, particularly trials of potential disease-modifying treatments. A diagnostic biomarker (or diagnostic or risk marker) can be any objectively measurable physical characteristic associated with the presence of disease. Here are two examples from other health conditions:

  • White blood cell count is objectively measurable and a progression marker of leukemia. A count that rises to abnormal levels indicates that the condition is getting worse, while a count that returns to normal indicates improvement.
  • Cholesterol is objectively measurable and, when high, acts as a risk marker of potential heart disease.

Progression markers could help transform the development of next-generation Parkinson’s disease treatments. Imagine that researchers conducting Parkinson’s disease clinical trials could run a straightforward, standardized laboratory test to understand how or if a possible new treatment was successfully slowing the disease process, helping to speed effective therapies toward pharmacy shelves. This is the kind of acceleration that a progression marker could make possible.

Diagnostic markers could help transform diagnosis and treatment for people living with Parkinson’s disease today. Imagine that your doctor could simply draw some blood and instantly confirm a Parkinson’s disease diagnosis, know how far the disease had already progressed, and make an informed prediction about the rate and nature of your disease progression. While it may not ultimately come in the form of a blood test, this is the kind of simplicity and objectivity that a diagnostic marker for Parkinson’s disease could make possible.

Team Fox Fundraising

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Can Michael J. Fox make an appearance at my event?

 

Michael is deeply grateful for the efforts of our Team Fox fundraisers and wishes he could be part of every event raising funds and awareness for Parkinson’s disease research. Despite of his larger-than-life image, Michael is just a person (with a family, an extremely busy schedule and an overwhelming number of requests for his time). For this reason, we are unable to fulfill requests for Michael to personally attend Team Fox events. Team Fox members are not permitted to reach out directly to Michael’s management team, publicists or family. These requests are outside of their scope and will come back to MJFF staff. Thank you for your understanding.

Can I solicit members of MJFF’s Boards, Councils and staff?

 

All representatives of MJFF appreciate the hard work of our Team Fox members. They believe so strongly in Team Fox that many of our Board, Council and staff members are also a part of Team Fox, and contribute financially to their own events. Many also make financial contributions directly to MJFF each year. For these reasons, we request that you please do not solicit any representatives of MJFF. However, we understand you may have a personal relationship with a Board, Council or staff member. If so, please notify Team Fox staff before soliciting them for your event so we are aware. 

Can I create items (shirts, hats, etc.) with the Team Fox logo?

 

Yes, as long as the logo is not redrawn or modified in any way and as long as the items are not being sold. The Team Fox staff can provide you a color logo or black and white version. We must review and approve items before they are made public.

Can I use the Michael J. Fox Foundation logo on my materials?

 

Members are not allowed to use the MJFF logo on their materials. The Foundation holds several large-scale events each year that are organized by Foundation staff, and does not want the public to perceive the hundreds of Team Fox events taking place to be Foundation-sponsored. By using the Team Fox logo instead of the Foundation’s logo, it is clear that the member is a part of Team Fox, supporting the Foundation, but that the event is not a Foundation-sponsored event.

Team Fox and The Michael J. Fox Foundation Logo Use

 

Below are some common questions about the use of the Team Fox and the Foundation logos in relation to Team Fox events. Please familiarize yourself with the Logo Guidelines and use it as a reference for answers to all of the questions below. To access the Logo Guidelines, log in to your Participant Center and download the Team Fox Collateral zip file.

Can I invite a celebrity to my event or have a celebrity chair my event?

 

All members must notify the Team Fox staff before making requests for a celebrity’s involvement. If people ask why, please explain that because Michael J. Fox is a celebrity, we do not want other celebrities confused, thinking the request is coming directly from Michael. And, because the Foundation hosts its own events and has its own celebrity relationships, we don’t want the celebrity to think that they are being asked to a Foundation-sponsored event. This is especially important when it comes to celebrities that the Foundation or Michael have worked with or plan to in the future.

Can I sell items with the Team Fox logo?

 

The logo may not be used on any item that is to be sold.

What materials can Team Fox provide me with for my event?

 

Team Fox can send you the following items for use at your event:

  • Team Fox banners
  • Team Fox stickers
  • Team Fox and/or MJFF flyers
  • MJFF newsletters
  • Team Fox Donation Envelopes

Which 13 events has Team Fox partnered with as an official charity?

 

Miami Marathon & Half Marathon
London Marathon
Santa Barbara Wine Country Half Marathon
Nautica New York City Triathlon
Bank of America Chicago Marathon
ING New York City Marathon
Mt. Kilimanjaro Climb
New York City Half Marathon
5 Boro Bike Tour
Escape from Alcatraz Triathlon
NYC IRONMAN
Toronto Waterfront Marathon, Half and 5K
Palm Beach Marathon Festival

Can I participate in one of the 13 partner events and raise money on behalf of Team Fox if I gain my own entry?

 

Yes. If you gain entry to one of our sponsored races, you can still run for Team Fox. After you independently secure your own entry, please email us at teamfox@michaeljfox.org so we can add you to the team. You are not required to raise a certain amount of money, but we encourage you to set your goal at the same level as our sponsored athletes for that particular race.

What is the difference between a Sponsored Team Fox Athlete and a Non-Sponsored Team Fox Athlete?

 

Sponsored Team Fox athletes participate in one of the 13 events of which we are a charity partner (see full list below), and gain guaranteed entry to that race by committing to a specific fundraising goal. Non-Sponsored Team Fox Athletes include those individuals who get in to any race on their own or through a lottery.

How do I receive sponsorship or donations from businesses for my event?

 

Team Fox members have had great success asking local companies and the local branch of larger corporations for support. Think about what local companies, stores, restaurants, gyms, etc. would benefit from getting their name out in support of a local philanthropic effort.
If you are planning an event, think about the supplies you need and approach a vendor for in-kind donations to use at your event. You can often request support from companies in exchange for advertising on your flyers, brochures, letters, t-shirts and other event materials. Note that because in-kind donations to your event do not directly benefit The Michael J. Fox Foundation, we cannot provide tax receipts for these contributions.

How can I obtain these materials?

 

Fill out the Materials Request Form in your Participant Center. Please allow two to three weeks for delivery.

Can a Michael J. Fox Foundation representative attend my event?

 

Team Fox and Michael J. Fox Foundation staff members love being at Team Fox events and try their best to attend when possible, but given travel costs and schedules it is impossible for us to have a representative at every event. If Team Fox members request our presence and let us know details of their event at least six weeks in advance we will do our best to try to get a representative to attend, though we can never make any promises. We also encourage Team Fox mentors to attend Team Fox events as a Foundation representative in place of staff if they are available.

Can Team Fox or The Michael J. Fox Foundation help promote my event in the media?

 

While we cannot directly promote your event in the media, we offer tools on dealing with the media in your Participant Center. You will find a sample press release and tips on pitching various media outlets. Please make sure to share the final draft of your press release with us. The Team Fox staff must sign off on it before it is made public.

How do I set up/edit my Personal Page?

 

Go to your Participant Center and click the “Personal Page” tab. Here, you can customize your page’s URL, update the title, and personalize the language that is pre-loaded in the text box. Don’t forget to click “Save” when you have finished working. To preview how the changes will appear on your page, click “View Personal Page” in the turquoise bar at the top of the screen.

Can I add photos or video to my Personal Page?

 

From the “Personal Page” tab of your Participant Center, you should see a “Photos/Video” link in the gray box to the right of the screen. Click on “Photos/Video.” Here, you can select the type of file and browse from your personal computer. After clicking “Save/Upload,” you will get a message letting you know that the file was uploaded successfully. Please note that only one visual can be uploaded at a time.

To go back to the Personal Page edit screen from here, either click “Personal Page” at the top, OR click “Content” in the gray box to the right. From there, you can view your page to see how the photo or video appears.

Can I link to other pages on my Personal Page? How can I add URLs?

 

Unfortunately, you cannot create hyperlinks directly in the text box on the Personal Page edit screen. However, if you create a link in a Word document, you can copy and paste it directly into the text box

What is my Participant Center?

 

Your Participant Center is your one-stop shop for all things related to your Team Fox fundraising efforts. Only you have access to the Participant Center. Here, you can set your fundraising goal, send emails to your support network, track your progress, customize your personal page and more. It is only accessible if you are logged in.

What is a matching gift, and how can it help my fundraising efforts?

 

Many companies offer employees a matching gift benefit that doubles (or in some cases, triples) your gift. By participating in these programs, you and your supporters can significantly increase the impact of your contribution in the fight to cure Parkinson’s disease.
Contact your company’s Human Resources or Finance department to see if your company has a matching gift program (and encourage your donors to do the same), taking note of any possible restrictions. Fill out the proper forms, and then send your paperwork with donations to The Michael J. Fox Foundation. Remind your donors that their companies may have matching gift programs too.

Will donors who support my Team Fox efforts be contacted by the Foundation?

 

Your donors will not be solicited for donations to The Michael J. Fox Foundation. They have the opportunity when they make a donation online to subscribe to the Team Fox email newsletter and other Foundation communication.

Can I personalize the URL to my Team Fox page?

 

Yes. You should see a gray box at the top of your Personal Page edit screen. It says “Personal Page URL” and there is a link called “URL Settings.” Click that link to update and customize, set as public or private, and save. Your URL will then look like www2.michaeljfox.org/goto/yourpersonalization. This can also be written as www.teamfox.org/goto/yourpersonalization.

How do I direct people to my page?

 

Send your friends and family the link that appears in the gray box at the top of your Personal Page edit screen. If you customize it, send them the customized link, or just send them the link as it appears on its own.

I would like to donate a portion of proceeds from sales of my XXX [book, CD, art, jewelry, etc.] to The Michael J. Fox Foundation. How does this work?

 

Portion of proceed sales are great Team Fox fundraisers. While the Foundation is not set up to help promote the sales of such items, we are greatly appreciative to be the beneficiary of your sale. In all materials related to the sale, please note the exact percent of proceeds (or dollar amount per item) that is going to the Foundation.

How do I make it clear that this event is supporting the Foundation while using Team Fox language?

 

Please indicate on all materials that this is a Team Fox event whose proceeds will benefit The Michael J. Fox Foundation for Parkinson’s Research. For written materials, we suggest using the following sentence: “[Insert name of event] is a Team Fox event to benefit The Michael J. Fox Foundation.”

Team Fox members also have the opportunity to request a formal letter of support, which the Team Fox staff can provide. This document is often helpful for members approaching potential sponsors who want to confirm the association between the Team Fox member and the Foundation. The Team Fox staff can prepare an Acknowledgment Letter to use for these solicitations. Email us at teamfox@michaeljfox.org

Can I be reimbursed for my fundraising expenses?

 

The Michael J. Fox Foundation is not responsible for the reimbursement of your fundraising expenses. To keep your expenses down, consider asking local businesses for in-kind donations in exchange for advertising on your flyers, brochures, letters, t-shirts and other event materials. Because in-kind donations to your event do not directly benefit The Michael J. Fox Foundation, we cannot provide tax receipts for these contributions.

Where does the name and date of my event appear?

 

During the registration process for Team Fox 2012, you are asked for event information. This gets stored in our database. In order for your event information to appear on your fundraising page, there is a placeholder for Event Name and Event Date that you will see on your personal page. Please fill that in when you customize the page in your Participant Center.

I formed a team and am the captain. Why do I have a personal page as well as a team page? Which one should I use to fundraise?

 

Every member of a team gets their own personal fundraising page, including the team captain. All fundraising collected on the personal pages will be rolled into the total for the team page.

Does the Foundation cover equipment purchases?

 

No, unless it can be demonstrated that the equipment purchase is critical to the completion of the proposed work and cannot be obtained through other means (e.g., with a collaborating lab or core facility). However, no “equipment only grants” will be considered.

Where can I find the Contribution Form?

 

Log in to your Participant Center and download the Team Fox Handbook.

What if a check is made out to me, not to The Michael J. Fox Foundation?

 

If a supporter makes the check payable to you, simply endorse the check with your signature, write “Payable to The Michael J. Fox Foundation,” and submit it with a Contribution Form.

What is the difference between Team Fox and The Michael J. Fox Foundation?

 

Team Fox is The Michael J. Fox Foundation’s grassroots community fundraising program and is part of the Foundation. Team Fox members fundraise through various events and activities to benefit the Foundation; however, Team Fox members themselves are a part of Team Fox, not representatives of the Foundation. Team Fox provides a common brand and identity for people all over the world raising funds and awareness on behalf of the Foundation.

Where can I get regular updates on Team Fox?

 

Visit the Team Fox section of the FoxFeed Blog for discussion questions, Team Fox news, Team Fox members in the news, information on upcoming Team Fox events, stories about past Team Fox events, and more. Here, we hope to foster a thriving online community for our Team Fox members and your supporters. The information presented is for the purpose of expanding and strengthening the Team Fox community by keeping our members and friends informed about the latest Team Fox activity and updates.

How do I receive information about my fundraising efforts on the blog?

 

Email details about your event or fundraising project to teamfox@michaeljfox.org. Don’t forget to include pictures.

Can I accept contributions and write a check to The Michael J. Fox Foundation from my personal account?

 

We don’t recommend this method. If you deposit donations into your personal account, the IRS will consider that deposit income in your account and tax you on it. Also, because the check is from your account, we will not be able to issue your donors tax receipts for their gifts.

What should I do with cash donations?

 

It’s never safe to mail cash. Have cash donors fill out a Contribution Form with their contact information and donation amount. Transfer the cash into a cashier’s check and send us both the check and the form.

Who acknowledges my contributors?

 

The Michael J. Fox Foundation will send an acknowledgment for tax purposes to anyone who donates $5 or more to your Team Fox efforts. It is also a good idea to send your own personal thank-you message to anyone who responds to your request for support. Share photos or updates of your progress to make contributors feel included in your efforts to support the Foundation’s mission. You can access a list of your donors by logging in to your Participant Center and clicking the “Progress” tab.

Where do I send my donations?

 

Mail contributions to:
The Michael J. Fox Foundation for Parkinson’s Research
ATTN: Team Fox
P.O. Box 5014
Hagerstown, MD 21741-5014

Does Team Fox use social media?

 

Team Fox is actively posting about our latest activities on Facebook and Twitter. Like us at www.facebook.com/teamfox and follow us at www.twitter.com/teamfox.

Do my materials need to be reviewed by Team Fox before printing?

 

All Team Fox event materials must be submitted to the Team Fox staff for review and approval before they are made public. This includes, but is not limited to, press releases, pitch letters, printed or electronic advertisements, save-the-dates and invitations, brochures and any other form of event collateral.

Team Fox Athletes

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How do I become a Sponsored Team Fox Athlete?

 

You must follow our simple, three-step process to get registered as a sponsored Team Fox athlete.

  1. Before registering for one of our sponsored events, please email teamfox@michaeljfox.org to confirm your entry status.
  2. Once you have heard back from Team Fox regarding entry, complete the necessary commitment form that will be provided to you. Once we receive that form, your spot will be confirmed.
  3. Sign up for Team Fox! Complete the appropriate registration (we will provide the link) and set up your online fundraising page.

Please note, if you register for one of our sponsored events without getting the “green light” from Team Fox, there may not be spaces left on our team. If this occurs and you already signed up for Team Fox, we will be unable to refund any Team Fox registration fees.

How do I become a Non-Sponsored Team Fox Athlete?

 

Team Fox has runners, walkers and triathletes participating in races all over the world. By joining Team Fox as an athlete you will receive a singlet to race in, as well as a personal online fundraising page and other fundraising tools and materials. Secure entry to any race on your own, then register through Team Fox to set up your fundraising page.

Can I participate in an athletic event for Team Fox to waive any registration fees associated with that event?

 

Unfortunately, we cannot pay for each athlete’s registration fee, whether you are sponsored or non-sponsored. Instead, we encourage you to incorporate your particular event’s fee into your fundraising efforts.

What happens if I’m a Sponsored Team Fox Athlete and I don’t meet my fundraising minimum? What if I don’t meet my fundraising minimum as a Non-Sponsored Team Fox Athlete?

 

All Sponsored Team Fox Athletes must fill out and sign a commitment letter that outlines your specific athletic event and date as well as your fundraising minimum. If you do not raise that amount by December 1, your credit card will be charged the difference. Non-Sponsored Team Fox Athletes are not required to sign a commitment letter, so there are no repercussions for an unmet fundraising goal.

Accelerate Your Research

Applying for a Grant

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What review criteria does The Michael J. Fox Foundation use when selecting proposals to fund?

 

The Foundation looks for scientifically compelling, logical, and well-crafted research proposals that offer real potential for improving treatments for people with Parkinson’s disease. In general, proposals are reviewed along a number of key factors, including responsiveness to the specific funding program, scientific rationale, experimental design, investigator expertise, and overall feasibility.

Do you have a Conflict of Interest policy for the Foundation reviewers of grant proposals?

 

Yes. Reviewers may not submit a proposal to a program where they are acting as a reviewer or would have a clear and direct conflict. This includes proposals on which they are acting as a lead investigator or receiving payment. Additionally, reviewers are not allowed to participate in the discussion of any grant where the applicant is from the same institution as them or has a current collaboration with them.

How do I submit a full application once my pre-proposal has passed the first stage of review?

 

For funding programs with a two-stage review process, applicants who pass the pre-proposal stage will be sent additional instructions via email for submitting a full proposal. Full proposals will be linked to pre-proposals through our online system. Applicants will be asked to update the online submission form of their original pre-proposal and attach proposal documents.

How is my full application reviewed?

 

A review committee, made up of the Foundation’s scientific staff and external experts in the fields appropriate to the funding program, reviews all of the proposals. In general, each proposal is reviewed by at least two independent reviewers. Top proposals are discussed at a meeting of the review committee. MJFF scientific staff makes final award decisions based on feedback from these reviewer discussions and an analysis of current MJFF funding portfolio overlap.

Do I need to submit a “pre-proposal”?

 

Some programs require the submission of a “pre-proposal.” Pre-proposals may require simply a brief summary of a project’s goals and aims or may require more detailed information about the rationale and/or current status of a project idea. Programs may have different requirements for what to include in the pre-proposal and applicants should carefully review the submission instructions. Pre-proposals are reviewed by internal Foundation scientific staff and external advisors as appropriate in order to identify projects to invite for further funding consideration. Not all applicants will be invited to submit a full proposal. Given the desire for rapid decision making, no formal feedback is given to applicants whose projects are not invited to the second stage of review.

What makes a successful grant proposal?

 

Successful proposals are based on clear scientific ideas that hold obvious potential to impact our understanding of Parkinson’s disease and ultimately development of improved treatments for people with the disease. Applicants should clearly state the scientific question being addressed and provide a detailed research plan. Proposals should fit the goals of the specific funding program, so it is important to review all program information before submitting a proposal.

How quickly are proposals reviewed?

 

The Foundation prioritizes speed and efficiency in its review and funding of research grants. MJFF employs an expedited review process. Depending on the program, funding decisions can be made as early as six weeks or up to three months after full proposal submission. Review the specific funding program information for details on expected review and funding decision dates.

How do I apply for a grant?

 

The Foundation accepts proposals primarily through our designated Requests for Applications (RFAs). All proposals must be submitted online through the Foundation’s online grant submission system unless otherwise directed by a Foundation research staff member. In general, we do not accept unsolicited proposals, although investigators are invited to contact research staff to help determine the RFA most appropriate for the proposed work.

Can I have a deadline extension for submitting my proposal?

 

No. The Foundation has tight timeframes for reviewing proposals, given our desire to fund work quickly. Therefore, we must strictly enforce our deadlines and no extensions are granted. Applicants should ensure they are available to communicate with Foundation staff after the deadline to answer possible questions regarding their proposal. If a proposal is submitted on time, but no one is available to answer clarifying questions after the deadline, the application could still be disqualified and removed from the review process.

Can I submit a proposal to the Foundation using another funder’s proposal format?

 

No. The Foundation posts specific application format and instructions with each funding program on our website. Using other funding organization's instructions and templates (e.g., NIH) is not appropriate and could result in disqualification during administrative review.

What is the Foundation’s policy for direct and indirect costs?

 

Although MJFF prefers that its grant funding go toward direct research efforts ('direct costs') such as study supplies and personnel, we appreciate that institutions often require a percentage of funds ('indirect' or overhead costs) to support the general infrastructure for performing the work (e.g., electricity, lab space, etc.). Your budget can include indirect costs no more than 25% (Academic institutions) or 10% (for-profit organizations) of direct costs, although this may differ for specific funding programs. Please review the program instructions for further details.

For collaborative projects between multiple institutions, indirect costs are paid only once: either to the Principal Investigator's institution as a percent of total direct costs or, in the case of multiple investigators as different institutions, to each institution as a percent of each institution's direct costs.

Does the Foundation cover travel costs?

 

Yes and no. The Foundation allows costs to cover travel necessary for completing a research project such as traveling off-site to perform work in the field or in a collaborator’s lab. However, general travel costs to scientific conferences and meetings are not allowed. Travel costs for Foundation-required assessment meetings are paid directly by the Foundation and should not be included in the proposal budget.

Does the Foundation allow multi-investigator, collaborative proposals?

 

Yes. Since one laboratory group may not possess the expertise in all steps of a particular project, collaborations are strongly encouraged for all proposals submitted to the Foundation. This is especially important for applicants seeking to use specific reagents or tools — including animal models of Parkinson’s disease — for which the applicant has limited previous experience.

Does the Foundation fund outside the United States?

 

Yes. The Foundation funds grants in labs around the world in order to engage researchers with a broad range of expertise and promising ideas.

Does the Foundation fund only academic labs?

 

No. The Foundation is interested in funding high-quality Parkinson's science wherever it can be done best. We fund researchers working in labs at universities, for-profit companies and nonprofit research institutions.

What are the administrative guidelines?

 

Being an Awardee

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What does it mean to be a Foundation Awardee?

 

First, congratulations for receiving an MJFF award! Without you, The Michael J. Fox Foundation would not be able to promote the critical work needed to accelerate delivery of new treatments and a cure for people with Parkinson’s disease. As an awardee, we welcome your hard work and commitment and look forward to interacting with you during the course of your project.

It is important to understand that the Foundation in general funds specific research projects rather than simply providing funds to a researcher to use for general research efforts. Therefore, all awardees work with the Foundation’s scientific staff to define an appropriate set of project deliverables and milestones. An awardee must also sign a contract that details the specific terms and conditions for accepting MJFF funding. If appropriate, additional special requirements for awardees are indicated in the funding program information. In general, awardees must guarantee they have not received, nor will seek, direct overlapping funding from another organization for a project that the Foundation agrees to fund. Awardees must provide valid approvals (IRB, IACUC, etc.) that cover the entire duration of the project period. Awardees also must participate in assessment meetings and calls as directed by MJFF staff, including submitting required progress and expense reports. Grantees must participate openly in discussions regarding the project with the Foundation’s scientific and research staff and advisors. Grantees are also responsible for adhering to the Foundation's data sharing rules, as well as publishing information as quickly as possible. For any resulting publications (during or after the grant period), awardees are required to acknowledge that the project was funded by “a grant from The Michael J. Fox Foundation."

Where can I find information about progress and expense report requirements for my grant?

 

Awardees will be sent information and reporting templates when required by the Foundation staff for internal review or formal assessment meetings. It is important that reports are complete and accurate when submitted as these are often used for making decisions about continued payments and/or supplemental funding opportunities.

Can funds be reallocated and/or carried forward from year to year?

 

Awardees are required to inform The Michael J. Fox Foundation if any changes need to be made to their award scope, budget or timeline. Funding reallocation decisions are made on a grant-by-grant basis. To request reallocation of funds (e.g., to move from supply costs to personnel costs), awardees must contact the Foundation's research staff for permission in advance of the reallocation. A justification for the reallocation request will be required, as well as an up-to-date expense report for the grant and details of the funds to be reallocated. Reallocations are subject to approval by the Foundation's research staff. In general, the Foundation has no problem carrying funds forward from one year to the next for multi-year projects. However, decisions about carrying forward funds are made on a grant-by-grant basis in the context of the grant timeline and suitable progress of the project. Carry-forward requests must be justified and should be communicated to the Foundation's Research staff through required expense reports, or by email if the Foundation staff has indicated that it is a case where a no-expense report is required. Carry-forward requests are subject to approval by the Foundation's Research staff.

Can I request a no-cost extension for my grant award?

 

Yes, but no-cost extensions are approved only on a grant-by-grant basis. To request a no-cost extension, awardees must contact the Foundation research staff in advance of the end of the grant. Awardees must justify the reason for the no-cost extension request, as well as provide a proposed updated timeline for the completion of the work, and a current expense report for the grant. In general, an awardee may request only one no-cost extension

Can I apply for supplemental funding?

 

The Michael J. Fox Foundation considers supplemental funding requests on a case-by-case basis. Often, such considerations occur at the end of a grant when awardees have presented their final project results. The Foundation staff may request supplemental proposals as part of the post-award feedback. Awardees may also submit next-step proposals to open funding opportunities, but are encouraged to discuss such proposals with the Foundation’s research staff before submitting. Please note that the Foundation cannot guarantee that supplemental funding will be available immediately upon completion of the original award and does not generally offer “bridge funding.” Awardees should prepare for this possibility in advance of the end of the grant funding period.

Does The Michael J. Fox Foundation ever terminate funding?

 

Yes. The Foundation will terminate funding when necessary. Reasons for termination are detailed in awardee contracts but may include improper use of funds or re-direction of funds toward activities not part of the project as funded. The best way to avoid termination of funds is to contact research team staff before making any major changes to your project scope. In addition, some projects may include clear “go/no-go” milestones where if the milestone is not met, the project will be terminated. Such milestones will be discussed with the awardee at the time of award contracting.

What is the Foundation’s position on intellectual property related to projects it supports?

 

Every Foundation grant contract includes detailed IP and sharing policies, and grantees are required to adhere to these policies. The Michael J. Fox Foundation acknowledges that discoveries made by researchers under its sponsorship are the property of those conducting the Research and shall have the first opportunity to exploit the Research commercially or otherwise. You will be required to agree that you will cooperate and collaborate with the Foundation and other researchers and share access to results under fair and reasonable terms and conditions. Applicants with questions about the specific IP and sharing terms that apply to their award contracts should read our MJFF Administrative Guidelines.

I’m moving. Can funds be transferred to my new institution?

 

For most Foundation grants, research funds stay with the Principal Investigator. If you change institutions, notify the Foundation research staff in advance of your move. You will need to provide an acknowledgment from both the current and future institution recognizing the transfer of work as well as funds, and a current expense report outlining spent and remaining funds. Unspent funds remaining at the original institution must be returned to the Foundation so that they can be provided to the new institution.

BioFind: Biomarker Discovery

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What is BioFIND?

 

BioFIND is a two-year observational clinical study designed to collect biosamples that will be used to discover and verify biomarkers of Parkinson's disease (PD). The study will be carried out at 5 academic clinical sites in the United States and is expected to begin recruitment in the fall of 2012. This study and is sponsored by The Michael J. Fox Foundation for Parkinson's Research with support from the National Institute of Neurological Disorders and Stroke (NINDS). BioFIND is led by Principal Investigator Un Jung Kang at the University of Chicago.

 

What is BioFind's Confidentiality Statement?

 

MJFF and the BRC treats all Letters of Intent (LOI), Full Proposals, research projects and associated research information (collectively, the “Confidential Information”) in confidence using no less than reasonable care in protecting such Confidential Information from disclosure to third parties who do not participate in the grant review process and MJFF assessments. All Confidential Information will be used by the BRC, MJFF and its grant reviewers (“Reviewers”) only internally for the purposes of reviews and assessments, and will be shared only in accordance with its sharing policy stated herein. Notwithstanding Reviewers’ obligations regarding such Confidential Information, such obligations cover any information retained in their unaided memories and may not be used without the permission of the disclosing party. Notwithstanding the foregoing, the obligations governing the disclosure and use of Confidential Information do not apply with respect to Confidential Information that it can be demonstrated:

  • was generally known to the public prior to the effective date when the LOI was submitted; or
  • becomes generally known to the public through no unlawful or unauthorized act of omission by any recipient of Confidential Information, or in violation of this review process; or
  • was independently developed by any recipient prior to the effective date of this review process; or
  • was disclosed to a recipient by a third party who has the right to make such disclosure.

If any recipient of Confidential Information is requested to produce any of the Confidential Information pursuant to a legal or governmental proceeding, such recipient shall give the applicant or other owner of such Confidential Information (the “Discloser”) as much prior notice of such requirement as is reasonably practicable under the circumstances and shall use its reasonable efforts to assist the Discloser of such Confidential Information in objecting to such request. If a recipient is compelled to disclose any of the Confidential Information pursuant to such legal or governmental proceeding, such recipient shall use its reasonable efforts to assist Discloser in obtaining confidential treatment for such Confidential Information, will disclose only that portion of the Confidential Information which is responsive to the order, and will provide the Discloser with any copies of Confidential Information so disclosed; provided that such Confidential Information shall remain confidential until it falls into one of the categories specified in this Section entitled “CONFIDENTIALITY.”

What are biomarkers?

 

A biomarker can be any objectively measurable physical characteristic associated with the presence of disease (diagnostic marker), or any characteristic that changes over time in a way that can be tied to the progression of disease (progression marker). Examples from other health conditions include: Blood pressure, which is objectively and easily measured and, when high, acts as a diagnostic marker of potential heart disease; and, white blood cell count is a progression marker of leukemia. A count that rises to abnormal levels indicates that the condition is getting worse, while a count that returns to normal indicates improvement. Learn More About Biomarkers

Who can take part in BioFIND?

 

BioFIND seeks to enroll participants from two groups: 120 controls who do not have PD and 120 typical Parkinson's patients (diagnosed within the last 5 to 15 years). The typical age range of patients will be between 55 and 85. Volunteers will be enrolled in BioFIND through 2013. Once enrolled, subjects will only complete two study visits.

What is the visit schedule for individuals who enroll in the study?

 

Participants will be required to make two study visits during the BioFIND study. The first visit will include different tests, assessments, and biologics sampling, including motor, neuropsychiatric and cognitive assessments and blood sampling. The second visit will be a brief clinical test, blood sampling, and CSF sampling.

Do participants have to go to a BioFIND site to participate in the study?

 

Yes. Because the study has been designed with highly standardized protocols that must be strictly adhered to across study sites, enrolled subjects must visit an official BioFIND clinical site to conduct all study visits. Learn More About Additional PD Studies

What tests and assessments will be performed on subjects?

 

Study participants will be required to complete motor assessments, neuropsychiatric/cognitive testing, blood collection, and CSF collection. 

What data and specimens will be made available to researchers from BioFIND?

 

All test data and specimen collected as part of the BioFIND protocol will be submitted to the central study repositories and will be made available through a study website in early 2013.

Who has access to BioFIND data and specimens?

 

Investigators from academic institutions and industry organizations will be allowed to access the repository for discovery purposes. Investigators are required to submit basic information about themselves for basic administrative review to ensure legitimacy. Upon approval, investigators will be given immediate access.

What kinds of research can be conducted on the data and specimens?

 

BioFIND data will be available to any researcher who is approved for access to the database, with an emphasis on biomarker discovery. If Investigators are seeking specimen for verification or validation projects, PPMI samples may be more appropriate. Learn More About PPMI Data and Specimens

LRRK2 Cohort Consortium

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How do I access LCC data?

 

Information about applying for access to LCC data is available here. Information about the LCC and what’s included in the database can be found here.

Who can access LCC data?

 

The LCC was designed to provide all investigators in the scientific community with open access to study data. Investigators accessing LCC data must complete the registration process by providing their intended use of the data, signing the LCC Data Use Agreement and undergoing limited screening. An investigator’s affiliation with a scientific or educational institution and/or the rationale for the data request will be reviewed. It is anticipated that most requests for access will be approved rapidly.

How often is the LCC database updated?

 

New entries into the clinical database are transferred quarterly from the Clinical Trial Coordination Center to the database. 

How do I request LCC specimens?

 

LCC specimens can be requested through the MJFF Resources RFA page.

What kinds of biospecimens are being collected in LCC? How do I apply for access to them?

 

Urine, serum, plasma, RNA and cerebrospinal fluid are being collected. Investigators seeking to conduct studies using these biospecimens must submit information about themselves and a letter of intent describing the proposed use of the specimens for the study for review by the LRRK2 Biospecimen Review Committee. Select applicants will be invited to submit full proposals. Additional information about how to request LCC specimens can be found here.

Why is there more clinical data available than biospecimens?

 

All participating sites were running LRRK2 cohorts prior to joining the LCC.  To be eligible to join the LCC, sites had to agree to share a core set of clinical data.  Sites were also asked to share relevant biospecimens.  However, not every site was able to collect all types of biospecimens.  Therefore, the LCC clinical dataset is more robust than the corresponding biospecimens. 

All biospecimens included within the LCC resource are tied to corresponding clinical data. 

What kinds of studies can LCC data and biospecimens be used for?

 

It is anticipated that the clinical data and biospecimens being collected in LCC will be useful in characterization studies, which will bolster scientists understanding of the natural history of premotor PD and the differences between idiopathic PD and LRRK2 parkinsonism. Because biospecimens are a limited resource, they are primarily reserved for association studies. Investigators may request access to biospecimens for such studies through an online application process. Click here for more information about requesting access to biospecimens or to review the Data Use Agreement and Biospecimens Use Agreements.

Are there any stipulations that I have to agree to if I download data and/or gain access to biospecimens?

 

All investigators who download data or utilize banked biospecimens must agree to the policies outlined in the Data Use Agreement  and the Biospecimen Use Agreement.

Furthermore, new data generated by investigators using the LCC data or biospecimens will be made available to the research public as quickly as possible. To that end, investigators who download data agree to provide their new data back to the LCC upon completion of the analyses. The LCC may choose to incorporate the raw data into the LCC database. Similarly, investigators who receive access to LCC biospecimens will be required to submit data generated in their experiments to the LCC. Again, these results will be appropriately incorporated into the LCC study database. By reserving the right to include investigators’ results in the study database, it is hoped that new investigators will build upon the research findings generated by their colleagues. In addition to providing new findings back to the LCC, investigators using LCC data and biospecimens are required to provide summary information about their analyses on an annual basis, that may be placed on the LCC website.

What tests and assessment data are included in the LCC database?

 

The following clinical and imaging information and assessment results are included in the LCC database:

Clinical data includes:

• Medical and family history (including demographics)
• Physical examination
• Neurological examination
• Vital signs
• MDS-UPDRS scores (including Part III and Hoehn & Yahr)
• Modified Schwab & England ADL
• UPSIT (olfactory testing )
• Hopkins Verbal Learning Test
• Benton Judgment of Line Orientation
• Semantic fluency
• Letter number sequencing
• Symbol digit modalities
• Montreal Cognitive Assessment (MoCA)
• Epworth Sleepiness Scale
• REM Sleep Behavior Questionnaire
• Geriatric Depression Scale (GDS-15)
• State-Trait Anxiety Inventory for Adults
• QUIP
• SCOPA-AUT
• Current medical conditions review
• Concomitant medication review

Imaging data includes:
• DaTSCAN Imaging for PD subjects and controls subjects
• Structural MRI Imaging
• Diffusion Tensor Imaging (DTI) will be available from a subset of participants

Results from the analysis of the following will also be included:
• Clinical laboratory evaluations (including CSF hemoglobin)
• DNA sampling

Are all the sites included in the LCC using a standard protocol?

 

The LCC brings together multiple sites across nine countries.  Each of these sites had ongoing existing LRRK2 cohort efforts prior to the formation of the LCC, therefore each joined with their own protocol and Case Report Form.  MJFF worked with each site to agree upon a core set of measures that would be collected by each group. These measures were in part decided based on the work of PPMI.  Click here to download the list of measures collected by each site. 

Which LRRK2 mutations are included in the LCC?

 

The LCC brings groups with ongoing research on LRRK2 parkinsonism together with the goal of sharing resources, troubleshooting common problems and identifying best resources to speed collective efforts to move LRRK2 toward practical therapeutic relevance for patients. LCC is currently assembling and studying groups of people with and without PD who carry mutations in the LRRK2 gene. The most common mutations included in the LCC are G2019S and R1441G. The consortium also has a very small representation of individuals with the following mutations: R1441C, N1437H, I2020T, Q930R, and S1228T. Finally, the LCC collects clinical data from the risk variants G2385R and R1628P.

 

Please contact us if you have any questions about LCC.

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