Frequently Asked Questions on Biosample Access and Resources Available
Overview of PDBP Data Management Resource
The National Institute of Neurological Disorders and Stroke (NINDS) Parkinson's Disease Biomarkers Program Data Management Resource (PDBP DMR) is a web-based tool and resource for the Parkinson's Disease Biomarkers Community.
About the system
The PDBP DMR includes development of a web-based data management system that provides tools to PDBP supported projects for both the collection and quality assurance of data in a standardized format. The PDBP DMR also coordinates the assembly of de-identified data into a common database thus enabling the query and distribution of aggregate data for the acceleration of PD biomarkers discovery and validation. The PDBP DMR synchronizes efforts across government and non-government organizations involved in PD biomarker research as well, by developing a federated database. It also serves the general public by providing a website with updated content on projects and their scientific discoveries funded via the NINDS PDBP.
Requesting Access to the Data Management Resource
To request access to the PDBP Data Management Resource (DMR), please click here and fill out the online form.
For additional information on requesting an account, please visit the PDBP Requesting An Account page on our wiki.
Depending on your anticipated use of the system, you may wish to request access to the following modules:
- Query: displays collected data in table format
- Order Manager: allows users to place Biosample Orders
- NINDS Bio Repository Group: grants access to the PDBP biosample catalog and allows user to create biosample order
Please note only PDBP investigators have access to the GUID and ProFoRMS modules in the Data Management Resource.
You are required to upload a signed PDBP Data Use Certificate with your request.
- PDBP Data Use Certification Agreement for non genetic/non genomic data (simplified account request)
- PDBP Data Use Certification Agreement for genetic/genomic data
Your request will be reviewed by the PDBP DMR Data Access Committee to verify your intended use is appropriate and your affiliated institution is recognized as a research organization. You will be notified by email if your account request has been approved.
To submit data through the PDBP DMR, the researcher or healthcare professional will need to establish a PDBP DMR account. All data submitted to the PDBP DMR is de-identified, and this is accomplished through the generation of a global unique identifier (GUID) for each PDBP participant. To enable broad sharing of both de-identified clinical data and biospecimen resources, participants must be properly consented.
If you need assistance with the PDBP DMR, please consult the PDBP DMR User Documentation, an online help resource available here.
The NINDS Repository (at Coriell) is a biorepository which has banked biospecimens for neurological disease research since 2001. To date, it comprises over 30,000 de-identified samples from subjects with Parkinson's disease, amyotrophic lateral sclerosis, stroke, Tourette syndrome, and other neurological disorders, as well as from healthy controls, and has facilitated many landmark studies in gene discovery. Hence, it is a natural fit to expand its role to include biospecimens for biomarker research. Projects contributing biospecimens for the study of biomarkers will work with the NINDS Repository to assure standardized collection, banking, and distribution procedures so that harmonization across studies can allow for larger studies and more meaningful analyzes of potential biomarkers. A Biospecimen Resource Access Committee (BRAC) will review the request and communicate decisions regarding availability of biospecimens to the researchers.
Required Clinical Assessments
Listed below are the required clinical assessments for PDBP projects enrolling participants. These Required CRFs from the NINDS common data element website can be accessed directly from the links below:
Forms required at baseline visit
- Behavioral History (pdf)
- Demographics (pdf)
- Epworth Sleepiness Scale (pdf)
- Family History (pdf)
- Hamilton Anxiety Rating Scale (HAM-A) (pdf)
- Hamilton Depression Rating Scale (HDRS) (pdf)
- Informed Consent and Enrollment (pdf)
- Movement Disorder Society - Unified Parkinson's Disease Rating Scale (MDS-UPDRS) (pdf)
- Modified Schwab and England Activities of Daily Living Scale (pdf)
- Montreal Cognitive Assessment (MoCA)7_1 (pdf)
- Montreal Cognitive Assessment Scoring and Instructions (pdf)
- Neurological Exam (pdf)
- PDBP Inclusion and Exclusion Criteria (pdf)
- PDQ-39 (pdf)
- Prior and Concomitant Medications (pdf)
- Rapid Eye Movement Behavior Disorder Questionnaire (pdf)
- University of Pennsylvania Smell Identification Test (pdf)
- Vital Signs (pdf)
When biospecimens are collected