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ACCESS DATA AND BIOSPECIMENS

Available Resources

The Michael J. Fox Foundation for Parkinson's Research (MJFF) has supported several pre-clinical and clinical efforts that have generated valuable data, biospecimens and tissue resources for the research community. The table below summarizes the types of samples available from the clinical cohorts and the list provides additional details about all available resources. Researchers may request access to these resources with or without funding requests.

Qualified investigators may submit a single request for access to multiple resources.

Click here to make your request, or click through the boxes below to learn more.

Cohort Population Research Intent DNA RNA CSF Whole blood or blood pellet Plasma Serum Urine Brain tissue Peripheral tissue Clinical Data
PPMI De novo, unmedicated PD and controls Biomarker validation and verification
LRRK2 Cohort Genetic Understand genetic PD and biomarker discovery/validation
BioFIND Moderate to advanced PD and controls Biomarker discovery
DATATOP Early, unmedicated PD Biomarker discovery and validation
24-Hour Biofluid Sampling Early to moderate PD and controls Diurnal biomarker fluctuation
Rush University Brain Bank Community cohort Clinical pathological correlations
Arizona Parkinson’s Disease Consortium Community cohort Clinical pathological correlations

Parkinson's Progression Marker's Initiative (PPMI)

The PPMI program provides an opportunity for the PD research community to utilize biospecimens to identify biomarkers allowing the tracking of disease progression in early stage PD subjects. PPMI was established as a five-year, observational study of to assess progression of clinical features and imaging as well as biologic biomarkers in various populations. Investigators who request access to the PPMI resource will be required to comply with a Biospecimen User Agreement and/or a PPMI Data Use Agreement and to adhere to the PPMI Publications Policy.

Study Subjects: 400 de novo idiopathic PD patients and 200 healthy controls. In 2013, PPMI started recruiting up to 100 subjects at risk for developing PD in a prodromal cohort of PPMI.

Available Data: Clinical data including motor, non-motor (cognitive, neurobehavioral, neuropsychological, autonomic, olfaction, sleep), Imaging (fMRI, DaTSCAN SPECT, DTI and AV-133), and biologic (spinal fluid alpha-synuclein, Abeta, tau, phosphorylated tau levels). All data are de-identified to protect patient privacy.

Available Biospecimens: Urine, plasma, serum, whole blood, cerebrospinal fluid, DNA and RNA from blood

Learn More   |    Request Access to this Resource

LRRK2 Cohort Consortium

Launched as a pilot study in 2009, the LRRK2 Cohort Consortium is currently assembling and studying groups of people with and without PD who carry mutations in the LRRK2 gene. The study aims to complement PPMI to produce the most comprehensive and long-ranging dataset available for biomarker discovery work throughout the PD community. Investigators who request access to the LRRK2 Cohort Consortium resource will be required to sign the LRRK2 Cohort Consortium Biospecimen User Agreement and/or LRRK2 Cohort Consortium Data Use Agreement and to adhere to the Publication Policy.

Study Subjects: Approximately 765 Idiopathic PD patients (iPD), 777 PD patients who carry a LRRK2 mutation (mainly G2019S) (manifesting carriers – MC), 444 LRRK2 mutation carriers without PD (non-manifesting carriers – NMC) and 427 controls are currently enrolled. 

Available Data: For both Parkinson's patients and controls, the clinical data will include demographic information, neurological history, medication history, MoCA (Montreal Cognitive Assessment), ADL (Activities of Daily Living), MDS-UPDRS (Movement Disorder Society Unified Parkinson's Disease Rating Scale), Hoehn Yahr Stage, and Sleep/RBD (REM Sleep Behavior Disorder) questionnaire. All data are de-identified to protect patient privacy.  

Available Biospecimens: Serum, plasma, RNA from blood, whole blood, urine and CSF 

Learn More   |    Request Access to this Resource

BioFIND

BioFIND is a cross-sectional clinical study, designed to discover and verify biomarkers of Parkinson's disease, sponsored by MJFF with support from the National Institute of Neurological Disorders and Stroke (NINDS). Investigators who request access to the BioFIND resource will be required to comply with Biospecimens User Agreement and/or the Data Use Agreement, and to adhere to the Publication Policy.

Study Subjects: 120 well-defined, moderately advanced PD subjects and 120 healthy controls (upon completion of enrollment).

Available Data: For both Parkinson's patients and controls, the clinical data will include demographic information, neurological history, medication history, MoCA (Montreal Cognitive Assessment), ADL (Activities of Daily Living), MDS-UPDRS (Movement Disorder Society Unified Parkinson's Disease Rating Scale), Hoehn Yahr Stage, and Sleep/RBD (REM Sleep Behavior Disorder) questionnaire. All data are de-identified to protect patient privacy.

Available Biospecimens: Plasma, DNA and RNA from blood, whole blood Pellet, CSF

Learn More   |    Download Data|   Request Access to Biospecimens

Preclinical Tissue

MJFF has invested significant effort into producing genetically engineered animal models to further advance our understanding of Parkinson’s disease and provide effective translatable tools for drug discovery. MJFF has taken a proactive approach to make phenotypic characterization more uniform and streamlined by sponsoring a standardized comparison of new and existing preclinical models to be performed at independent contract research organizations. Under this initiative, models are grown up to 4, 8 and 12 months of age and undergo behavioral, neurochemical and pathological characterization to determine if they exhibit a PD-like phenotype.  Post-testing, over 30 different CNS and non-CNS tissues are collected and stored in order to make these tissues available to researchers for further detailed characterization.

Study Subjects: LRRK2 Wild type mouse, LRRK2 R1441G mouse, LRRK2 G2019S mouse, LRRK1 knockout mouse, Wild-type FVB mouse, Wild-type C57BL6 mouse, DJ1 knockout rat, Parkin knockout rat, Pink1 knockout rat, LRRK1 knockout rat, LRRK2 knockout rat, LRRK1/2 double knockout rat, LRRK2 R1441G rat, Wild-type Long Evans rat, Wild-type Sprague-Dawley rat.

Available Tissues: Adrenals, Aorta, Bone with marrow (sternebrae), Eyes with optic nerve, Gastrointestinal tract (including Esophagus, Stomach, Duodenum, Jejunum, Ileum, Cecum, Colon, Rectum), Heart, Kidneys, Liver with intact gall bladder, Lungs, Lymph node (including Axillary, Mandibular, Mesenteric), Pancreas, Peripheral nerve (sciatic), Pituitary, Prostate, Skeletal muscle (rectus femoris), Skin with mammary gland, Spinal cord (cervical), Spleen, Thymus, Thyroids , Brain Frontal Cortex, Brain Hippocampus, Brain Cerebellum and Brainstem.

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DATATOP

The DATATOP intervention trial, conducted by the Parkinson Study Group in the late 1980s, was a long-term study on the effect of Deprenyl and tocopherol (a form of vitamin E) on the progression of early PD. Data was collected at baseline and at a follow up visit, approximately 12-18 months later.

Study Subjects: Approximately 800 PD patients were recruited in the trial. There are no matching controls that are a part of this cohort.

Available Data: Clinical assessments in the DATATOP database include measures of neurological function, severity of PD, cognition, and mood.

Available Biospecimens: CSF, serum, urine, DNA

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24-Hour Biofluids

MJFF sponsored an Assay Qualification study that collected biospecimens (CSF and blood) over 24 hours at 11 different time points. The goal of this study was to understand the inter-subject variability and intra-subject variability of putative biomarkers in PD.

Study Subjects: 12 young healthy volunteers, 12 PD, 8 elderly aged matched volunteers

Available Biospecimens: CSF, serum, plasma

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Rush University Brain Bank

Rush University Brain Bank is one of the leading collections of brain samples and spinal tissue in the world. The collection includes a diverse group of subject types, including PD, PSP, and healthy controls.

Study Subjects: 42 PD, 400 controls, 3 DLB and 8 with Progressive Supranuclear Palsy

Available Clinical Data: Gender, age, clinical diagnosis, disease duration (yr), dementia, psychosis, Tremor dominant score, LD dose, LD duration(yr), Initial symptom, Motor fluct, Dyskinesia, UPDRS (III), H&Y, Brad/gait, rest tremor, rigidity, Brad, Post tremor.

Available Neuropathological Data: Postmortem interval, brain weight, neuropathological diagnosis

Available Biospecimens: Olfactory bulb, Midbrain, Supramarginal and angular gyrus, Orbital gyri, Middle and inferior frontal gyrus, Caudate, Putamen, Nucleus Accumbens, Inferior Temporal Gyri, Amygdala, Globus Pallidus, Hippocampus, Auditory cortex, Thalamus, Posterior cingulate gyrus, Primary visual cortex, Occipitotemporal gyri, Pons, Medulla, Cerebellum, Dentate

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Arizona Parkinson’s Disease Consortium

The Arizona Parkinson’s Disease Program (APDC) is a brain and body donation program that began in 1986 and has been enrolling healthy individuals and individuals with PD, AD and other neurologic disorders who are willing to donate their brains and other organs for research. MJFF began a partnership with the APDC in 2006 with the goal of establishing collaborations between investigators and the APDC by supporting studies that utilize well-characterized post-mortem tissue and associated clinical data to improve our understanding of PD.

Study Subjects: Approximately 120 living PD patients and 500 living control subjects are enrolled in the program and postmortem samples are available from over 250 control subjects, 125 PD subjects, 100 subjects with Lewy body dementia, and 175 subjects with Alzheimer’s disease with Lewy bodies.

Available Clinical Data: Results of standardized motor and cognitive testing, smell testing, autonomic symptom questionnaire (SCOPA-Autonomic and bowel movement questionnaire), Mayo Clinic sleep questionnaire and private medical history as well as age, gender, educational attainment and Apolipoprotein E genotype. Movement disorder testing includes the full UPDRS (parts I-IV) on all subjects (PD and non-PD), Hoehn and Yahr staging, tremor rating scores, Restless Legs Syndrome Rating Scale, and information regarding the presence of other clinical findings including myoclonus, dystonia, supranuclear gaze palsy, and square wave jerks. Cognitive testing includes a standardized battery of tests including the MMSE, MoCA, and tests that assess multiple cognitive domains. Additionally, all subjects have had timed tap testing and Purdue pegboard testing annually. Smell testing with the UPSIT-40 is performed every third year.

Available Neuropathological Data: Postmortem interval, brain weight, apoE genotype, neuropathological diagnosis, alpha-synuclein histopathology density scores for 10 brain regions, Unified Lewy Body Stage, DLB Consortium dementia probability rating, substantia nigra pigmented neuron loss score, total and neuritic plaque density scores in 5 brain regions, neurofibrillary tangle density scores in 5 brain regions, infarct type, age, location, number and volume and others.

Available Biospecimens: Fixed and frozen brain tissue, whole body autopsy tissue, CSF, blood serum

Learn More   |    Request Access to this Resource

PD Smartphone Data Challenge

Many symptoms and features of Parkinson’s disease can be objectively measured and monitored using simple technology devices we carry every day. Mobile phones are some of the most pervasive forms of monitoring devices, with many smartphones carrying basic sensors that can be used to give a window into a patient’s life. We have taken the initial steps with such a device, having developed a basic collection application that gathers data from a group of Parkinson’s patients and control subjects. We challenged researchers to find innovative ways of using this objective data to further scientific and medical research on Parkinson's disease.

Learn More |    Download Data

Request Process

Requests to access MJFF resources (with or without funding) may be submitted at any time for data, biospecimens, or both. Qualified investigators may submit a single request for access to multiple resources. To access data, please note that PPMI, BioFIND and PD Smartphone data are downloadable through external servers, LRRK2 cohort data requests will receive an expedited review, and data from all other resources may be requested through a single application process outlined below.

Reviews for funding and/or access to biospecimens will take place in May, July, September and November of 2014. To be considered for the May 2014 review, submit your request by April 14th.

INFORMATIONAL CONFERENCE CALLS

MJFF will hold 45-minute conference calls on the dates and times (US Eastern Standard Time) listed below to clarify and explain the goals of this initiative and to answer applicant questions. To participate in the call and receive call-in details, RSVP to conferencecalls@michaeljfox.org.

  1. March 24  @ 12pm 
  2. May 26 @ 12pm 
  3. July 28  @ 12pm 
  4. September 22  @ 12pm 

Instructions

  1. 1.

    Download and Complete Request Documents.
    **If only applying for LRRK2 data, the Letter of Intent (LOI) is not required.

  2. 2.

    Create an account, upload Request Documents, and submit request.

  3. 3.

    Await further instructions from The Michael J. Fox Foundation staff.

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