PPMI Frequently Asked Questions

Am I eligible to participate in PPMI?
Your eligibility will be determined by staff at the study site during your screening visit. We are seeking 400 PD participants — recently diagnosed Parkinson’s patients who are not currently taking standard medications for Parkinson’s disease — and 200 control participants — adults who do not have PD who are at least 30 years old and who do not have a first-degree relative (parent, child or sibling) with PD. Interested volunteers should contact the study call center at (877)-525-PPMI (7764).

How long will the study last?
PPMI will be conducted over the course of about five years. For individual participants, the duration will range from three to five years depending on their particular study entry date during an initial two-year enrollment period.

What will happen at the first visit?
The first, or screening, visit will be conducted by the study coordinator and investigator.  The screening visit is expected to last three to four hours and includes two parts:

1. First there will be a comprehensive review of study details and consent form. The consent form is a document you will be asked to sign if you are interested in participating in the study. This review is an opportunity to ask questions and address any concerns about participating. You may want to take the consent form home to review it and come back for the screening activities once you decide to join PPMI
2. Once you provide consent, evaluations and assessments will be conducted to determine your eligibility to participate in PPMI. This includes a medical history, neurological exam, physical exam, assessment of your vital signs, blood collection and cognitive assessments, medication review and DaTSCANTM. Consult the PPMI Imaging Procedures and Blood Sampling Overview/FAQs for more information about these procedures.

How often will study visits take place?
After the first (screening) visit, you will visit the site upon enrolling and again at 3, 6, 9 and 12 months. Visits will then occur every 6 months until the study is over.

How long will each visit take?
The study has been designed with a schedule of shorter and longer visits. Shorter visits are expected to take 1–3 hours and will include assessment of vital signs, medication review, motor testing and blood collection. Longer visits include a more comprehensive set of assessments and sampling, including motor, neuropsychiatric and cognitive assessments; DaTSCANTM and MRI imaging; and blood, spinal fluid, urine and DNA sampling. These visits are expected to take 6–8 hours, and can be spread over 2 days if more convenient. Please consult the Schedule of Study Activities for Year 1 to learn more about the procedures required at each visit.

The nearest PPMI site is far from where I live. Can I be part of the study but do my visits at a medical facility closer to my home?
Unfortunately, no.  Every PPMI site has been carefully selected for its ability to adhere to strict processes and procedures. This is because sample acquisition, handling and storage must be standardized so that results from all sites can be compared — critical for maximizing what researchers are able to learn from this and other studies.

Will I be paid for my time?
Participants will be compensated upon completion of each visit — $50/€38 for each short visit and $200/€150 for each long visit.

Can I choose to do only some of the study activities?
As a PPMI participant, you will be expected to complete all study activities and assessments. Parkinson’s disease involves multiple systems and processes in the body, and researchers have designed the study for the greatest chances of success.

Will my personal information and medical data be kept confidential?
Your privacy is very important. All data collected in PPMI will remain anonymous. Significant measures have been taken in designing the study to ensure that your identity remains completely private. Additional information on privacy policies and procedures can be found in the Informed Consent Form. 

What will happen to the biological samples you collect?
The samples collected in PPMI will be “de-identified” (stripped of your personal information to ensure your privacy) and sent to a central storage facility. De-identified samples will be analyzed for study-relevant characteristics using state-of-the-art lab procedures. The data from this analysis will be entered in a database maintained by the PPMI bioinformatics core at the Laboratory of NeuroImaging (LONI) at the University of California, Los Angeles. Samples will be banked in a central repository. The data, and the samples themselves, will be available to qualified Parkinson’s researchers on request for use in other studies.

Can I participate in other trials while I am enrolled in PPMI?
Yes, but we ask that you wait one year. After you have been enrolled in the study for a year, you may enroll in any other study you wish at the same time as you are participating in PPMI.

If I enroll, do I have to stop seeing my current physician?
No, you are encouraged to maintain your relationship with your doctor. When you come for study visits as a PPMI participant you will be evaluated by an experienced clinical research team. All other decisions about your medical care outside of the study are up to you. PD patients who enroll in PPMI may elect to have the PPMI study site share test results and clinically relevant findings with their personal physician.

What if my doctor suggests that I take medication for my Parkinson’s after I enroll?
Your health is of the utmost importance. While our hope is that participants will not begin taking Parkinson’s disease medications for the first 6 to 12 months, physicians and patients should make the decision to begin a new medication regimen independent of participation in PPMI.

What if a PPMI test reveals that I have an unexpected illness or medical problem?
The PPMI clinical team will report any unexpected results of this nature to you and, if given your permission, share this information with your physician.

Where is PPMI being conducted?
PPMI is occurring at 18 sites across the United States and in Europe. Find a site near you.

Who is sponsoring this research?
PPMI is sponsored by The Michael J. Fox Foundation for Parkinson’s Research.

I don’t qualify for PPMI, but I still want to help. What can I do?
Please help us spread the word to people who might be interested in participating. If you know someone recently diagnosed with PD, or someone who does not have PD and is not a first-degree relative (parent, child, sibling) of a PD patient, please refer them to http://www.michaeljfox.org/PPMI. You should also contact your nearest study site as they very likely are conducting other trials for which you may be eligible.

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