ACCESS DATA AND BIOSPECIMENS

The Parkinson's Progression Markers Initiative (PPMI) provides biospecimens for the Parkinson's research community to identify biomarkers of disease progression. PPMI was established as a five-year, observational study to assess progression of clinical features and imaging as well as biologic biomarkers in various populations. Investigators who request access to PPMI resources 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 with Parkinson's risk factors of hyposmia or REM sleep behavior disorder. In 2014, PPMI started recruiting up to 600 subjects (people with and without PD) with either a LRRK2 or SNCA mutation.

Available Data:

Clinical data including motor, non-motor (cognitive, neurobehavioral, neuropsychological, autonomic, olfaction, sleep), imaging (fMRI, DaTSCAN SPECT, DTI, AV-133) and biologic (spinal fluid alpha-synuclein, amyloid-beta, 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

The LRRK2 Cohort Consortium comprises three studies: LRRK2 Cross-sectional Study (closed), LRRK2 Longitudinal Study (ongoing) and 23andMe Blood Collection Study (closed). Each cohort includes LRRK2-positive Parkinson's patients, unaffected LRRK2 mutation carriers, idiopathic PD patients and control subjects. The Consortium follows standardized data acquisition protocols, and clinical data and biological samples are stored in a comprehensive Parkinson's database and biorepository.

Investigators who request access will be required to sign the Biospecimen User Agreement and/or the Data Use Agreement and to adhere to the Publication Policy .

LRRK2 Cross-sectional Study

Study Subjects:

793 idiopathic PD, 822 LRRK2+ PD patients (mainly G2019S), 722 LRRK2+ carriers without PD and 504 controls

Available Data:

demographics, neurological history, medication history, MoCA, ADL, MDS-UPDRS, Hoehn and Yahr Stage, and sleep/RBD questionnaire. All data are de-identified to protect patient privacy.

Available Biospecimens:

serum, plasma, RNA from blood, whole blood, urine and CSF

LRRK2 Longitudinal Study

Available August 2015

23andMe Blood Collection Study

23andMe is currently analyzing its data and samples and will share resources in the near future.

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. Investigators who request access to the BioFIND resource will be required to comply with Biospecimens User Agreement and/or the Data Use Agreement an to adhere to the Publication Policy .

Study Subjects:

Currently recruiting up to 120 well-defined, moderately advanced PD patients and 120 healthy controls

Available Data:

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, urine and saliva

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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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:

800 PD patients, no controls

Available Data:

Measures of neurological function, severity of PD, cognition and mood

Available Biospecimens:

CSF, serum, urine, DNA

MJFF sponsored two assay qualification studies that collected biospecimens (CSF and blood) over 24 hours at 11 different time points. The goal of both studies was to understand the inter-subject variability and intra-subject variability of putative biomarkers in PD.

Study Subjects:

The first study included twelve control volunteers that donated biospecimens at 11 time points over 24 hours on two separate occasions 10-14 days apart. The second study enrolled twelve PD patients and eight age-matched volunteers and collected the specimens at 11 time points during one 24 hour period.

Available Biospecimens:

CSF, serum, plasma

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

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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.

Levodopa Response Trial: This trial tested the hypothesis of using machine learning techniques and wearable sensor data to estimate clinically relevant measures of the severity of PD symptoms. The study focused on collecting wearable sensor data (using smart watches and smart phones) in both lab and home environment from 30 participants to monitor and track late stage PD symptoms in patients experiencing motor fluctuations. Various devices were used in this study: Pebble smartwatches, GENEActiv wrist accelerometers, and phone accelerometer data. GENEActiv data was analyzed and used to begin developing algorithms to estimate and predict measure of the severity of PD symptoms (tremor, dyskinesia, bradykinesia, day and nighttime activity level)

Study Subjects:

This sample includes data from 1 PD patients on Levodopa treatment, experiencing motor fluctuations and at least mild dyskinesia. The full dataset, when released, will include 30 patients under the same criteria.

Available Data:

This sample data consists of 7 files:

1. Demographics.csv: Summary of demographic data for the patient
2. Task summary.csv: A tagging table of the activities performed by a single patient during 6 rounds of tasks in the trial:
• a. Timestamps and symptom scores of each task.
• b. Time from medication intake (last and previous medication).
• c. The columns description are in a separate sheet in the excel file.
3. Shaking task time.csv: Start time of the shaking device calibration task
4. Geneactiv accelerometer data.csv: Raw accelerometer data (3-axial 50Hz, measurement units: g) that was collected by the Geneactiv smartwatch on the hand of the most affected side.
5. Phone accelerometer data.csv: Raw accelerometer data (3-axial 50Hz, measurement units: m/s^2) that was collected by the smartphone worn on the waist.
6. Pebble accelerometer data.csv: Raw accelerometer data (3-axial 50Hz, measurement units: g/1000) that was collected by the Pebble smartwatch on the hand of the least affected side.
7. 5sec activity level data.csv: Activity level data at 5 second resolution based on accelerometer input. For device synchronization purpose, the timestamps of the activity level measure correspond to the timestamps of the pebble accelerometer data.

Also included is a short PowerPoint deck with a brief description of the study protocol in the lab.

Each of the accelerometer data examples starts with a strong shake movement that was performed on all devices simultaneously, and can be used to sync all accelerometers with each other and with the shake activity indicated in the tagging table.