Access Data

The Parkinson's Progression Markers Initiative (PPMI) is an observational study following volunteers for at least five years 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 Use Agreement and/or a PPMI Data Use Agreement and to adhere to the PPMI Publications Policy.

Study Subjects:

• Original Cohort: 400 de novo idiopathic PD patients, 200 healthy controls, and 65 subjects with Scans Without Evidence of Dopaminergic Deficit (SWEDDs)
• Prodromal Cohort: 65 subjects with Parkinson's risk factors of hyposmia or REM sleep behavior disorder
• Genetic Cohort: In 2014, PPMI started recruiting up to 600 subjects (people with and without PD) with a LRRK2, GBA, or SNCA mutation.

Available Data:
Clinical data including motor, non-motor (cognitive, neurobehavioral, neuropsychological, autonomic, olfaction, sleep), imaging (fMRI, DaTSCAN SPECT, DTI, AV-133), biologic (spinal fluid alpha-synuclein, amyloid-beta, tau, phosphorylated tau levels), and genetic (SNP genotyping, whole exome sequencing, whole genome sequencing data. All data are de-identified to protect patient privacy.

Available Biospecimens:
Urine, plasma, serum, whole blood, cerebrospinal fluid, peripheral mononuclear blood cells, DNA and RNA from blood; fibroblasts and induced pluripotent stem cells from a sub-set of PPMI participants

The LRRK2 Cohort Consortium (LCC) comprises three closed studies: the LRRK2 Cross-sectional Study, LRRK2 Longitudinal Study and the 23andMe Blood Collection Study. The LCC followed standardized data acquisition protocols, and clinical data and biological samples are stored in a comprehensive Parkinson's database and biorepository, respectively.

Investigators who request access will be required to sign the Biospecimen Use 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/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 cerebrospinal fluid

LRRK2 Longitudinal Study

Study Subjects:
100 idiopathic PD patients, 100 LRRK2+ PD patients, 115 LRRK2+ carriers without PD, and 115 controls

Available Data:
Demographics, neurological history, medication history, MoCA, ADL, MDS-UPDRS, Hoehn and Yahr Stage, and sleep/REM Sleep Behavior Disorder questionnaire. All data are de-identified to protect patient privacy.

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

23andMe Blood Collection Study

Study Subjects:
20 idiopathic PD patients, 50 LRRK2+ PD patients, 150 LRRK2+ carriers without PD, and 20 controls

Available Data:
Demographics, limited family history, limited UPDRS, UPSIT, and limited information on anti-inflammatory medications and head injury or concussion

Available Biospecimens: Serum, plasma, whole blood, DNA and RNA from blood

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 data or biospecimens from BioFIND will be required to comply with Biospecimens Use Agreement and/or the Data Use Agreement an to adhere to the Publication Policy.

Study Subjects:
120 well-defined, moderately advanced PD patients and 100 healthy controls

Available Data:
Demographic information, neurological history, medication history, MoCA, ADL, MDS-UPDRS, Hoehn and Yahr Stage, and sleep/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, cerebrospinal fluid, urine, and saliva

The Deprenyl and Tocopherol Antioxidative Therapy of Parkinsonism (DATATOP) 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 were collected at baseline and at a follow up visit, approximately 12-18 months later.

Study Subjects:
Approximately 800 early PD patients. There are no matching controls as part of this cohort.

Available Data:
Measures of neurological function, severity of PD, cognition, and mood. The full clinical dataset is available for request through the NIH archives.

Available Biospecimens:.
DNA from blood, cerebrospinal fluid, serum, and urine

Study Subjects:
FS-1 was a neuroprotection study conducted in the mid-2000s by the University of Rochester and the National Institute of Neurological Disorders and Stroke to assess the impact of minocycline and creatine on the progression of Parkinson’s. FS-1 enrolled ~195 de novo PD patients who were diagnosed less than five years before the time of enrollment at 42 sites across the United States and Canada.

Download Raw Data

FS-Too was a neuroprotection study conducted in the mid-2000s by the University of Rochester and the National Institute of Neurological Disorders and Stroke to assess the impact of CoQ10, an antioxidant, and GPI 1485, a novel immunophilin compound, on the progression of Parkinson’s. FS-Too enrolled ~195 de novo PD patients who were diagnosed less than five years before the time of enrollment at 42 sites across the United States and Canada.

Study Subjects:
195 de novo PD patients. There are no matching controls as part of this cohort.

Download Raw Data

We challenged researchers to find innovative ways of using objective data to further scientific and medical research on Parkinson's disease. Over a period ranging roughly December 2011 - March 2012, data was collected from nine PD patients, at varying stages of the disease, and seven control volunteers, roughly matched for age and gender.

Available Data:

1. Audio
2. Accelerometry
3. Compass
4. Ambient light
5. Proximity (binary on/off)
6. Battery level
7. GPS

This trial tested the hypothesis of using machine learning techniques and wearable sensor data to estimate clinically relevant measures of PD symptom severity. The study collected wearable sensor data (using smart watches and smart phones) in both lab and home environment from 30 participants 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 one PD patient 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:
The sample data consists of seven files:

1. Demographics.csv
2. Task summary.csv: A tagging table of the activities performed by a single patient during 6 rounds of tasks in the trial:
   
   • Timestamps and symptom scores of each task.
   • Time from medication intake (last and previous medication).
   • 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.

This data is part of the Parkinson's Disease Digital Biomarker DREAM data challenge; which closes October 2017. Register today.

This dataset was used to generate the findings from the paper "Feasibility of large-scale deployment of multiple wearable sensors in Parkinson's disease," published in PLOS ONE. To view the paper, go here.