Rehabilitation Dataset Directory: Repository Profile

Parkinson's disease, Multiple System Atrophy (MSA), Corticobasal Degeneration (CBD), Progressive Supranuclear Palsy (PSP), Essential Tremor (ET), and Dementia with Lewy Bodies (DLB)

The National Institute of Neurological Disorders and Stroke (NINDS) Parkinson’s Disease (PD) Biomarkers Program Data Management Resource (PDBP DMR) enables web-based data entry for clinical studies supporting PD biomarker development, as well as broad data sharing across the PD research community (i.e., imaging, clinical, genetic, and biospecimen analysis). The PDBP DMR coordinates information and access to PD biospecimens distributed through the NINDS Human Genetics, DNA, iPSC, Cell Line and Biospecimen Repository, and the Harvard Neurodiscovery Initiative.

The program is a multi-site study where data collected from the individual sites are integrated in the PDBP database. Data are collected from PD patients, atypical Parkinsonian patients, patients with essential tremor, and healthy controls. All study subjects are asked to submit blood samples as well as a battery of clinical evaluations including motor, cognitive, and other background information. Additionally, a subset of subjects contribute cerebrospinal fluid samples.

The PDBP DMR coordinates this information and provides access to the information collected. It is designed to foster collaboration for all stakeholders, allow integration and leveraging of existing biomarker efforts, standardize data collection and management across efforts, and accelerate the discovery of new biomarkers.

Parkinson’s Disease, Biomarkers, Biospecimens, Biorepository, Genetics,  NeuroX genotyping, Structural imaging, Function imaging, Visualization, Lewy Body data, Neurological diagnosis, Dementia, NINDS Biorepository (BioSEND)

Specific clinical and cognitive assessment forms and data include: Demographics, Behavioral History; Family History, Prior and Concomitant Medications; Vital Signs, Movement Disorders Society-Unified Parkinson's Disease Rating Scale (MDS-UPDRS); Montreal Cognitive Assessment (MoCA); Rapid Eye Movement Behavior Disorder Questionnaire; Modified Schwab and England Scale, Parkinson's Disease Quality of Life Questionnaire-39; Epworth Sleepiness Scale; University of Pittsburg Smell Identification Test (UPSIT); and Hamilton Depression and Anxiety Scales (HAM-D & HAM-A).

National Institutes of Health (NIH),

National Institute of Neurological Disorders and Stroke (NINDS)

Clinical, Clinical, Biospecimens, Imaging

North America

United States

• Includes a wide variety of PD related data collected across multiple sites
• Contains longitudinally-collected data and biosamples from well-characterized PD and control participants 
• A variety of biospecimens available by request for distribution for both PD cases and control subjects. Specimens include: blood, urine, Ceribral Spinal Fluid (CSF), DNA, RNA, plasma and Serum collected over time from baseline to 60+ months post baseline.
• The PDBP receives, processes, stores, and distributes structural and functional magnetic resonance imaging data
• Includes family medical history data.
• Data query tool has extensive capabilities

An online application must be submitted and approved prior to accessing any study information

https://pdbp.ninds.nih.gov/

Data Query tool allows searching/filtering of the database by study, clinical form and/or data element, it also permits saving of queries and joining of forms (using the GUID) and additional filtering within selected studies. Query tool how-to video

Data submission tools include:

• Protocol and Forms Research Management System (ProFoRMS): electronic data forms supporting NINDS CDEs and unique data elements.
• Global Unique Identifier (GUID): Enables data to be associated with a subject without exposing/transferring Personally Identify Information (PII). The module is connected to the NINDS Centralized GUID server for GUID sharing across PDBP, NINDS, and NIA. 
• Data Dictionary: provides common definitions for consistent data capture and recording across studies.
  
• Data Validation: Validates submitted data against the data dictionary
• Meta Study: Enables a researcher to expand their research through creation of a secondary study that includes their data and data that is available through the PDBP
• Medical Image Processing, Analysis, and Visualization (MIPAV): Prepares image files for submission and validation.

An online application must be submitted and approved prior to submitting data

How to submit data to the DMR:

https://pdbp.ninds.nih.gov/how-to-guide#submit-data-to-the-dmr 

How to request access:

https://pdbp.ninds.nih.gov/how-to-guide#request-access-to-the-dmr

Request biospecimens from NINDS:

https://pdbp.ninds.nih.gov/how-to-guide#request-biospecimens-from-ninds

How to Upload Neuroimaging Data:

https://pdbp.ninds.nih.gov/how-to-guide#how-to-upload-neuroimaging-data 

Restricted access: An online application must be submitted and approved.  The application is reviewed by the PDBP Data Access Committee (DAC) to assure that use of data will be for research purposes only, and that no subject's identity can be revealed.

Parkinson's disease biomarkers program brain imaging repository:

https://doi.org/10.1016/j.neuroimage.2015.05.005 

Expanding the NINDS Parkinson’s Disease Biomarkers Program – Utilizing a Major Biomarker Resource to Address Atypical Parkinsonisms and Related Conditions:

https://www.mdsabstracts.org/abstract/expanding-the-ninds-parkinsons-disease-biomarkers-program-utilizing-a-major-biomarker-resource-to-address-atypical-parkinsonisms-and-related-conditions/