Purpose

Development of a central repository for PD-related genomic data for future research.

Condition

Eligibility

Eligible Ages
Over 18 Years
Eligible Genders
All
Accepts Healthy Volunteers
No

Inclusion Criteria

  • Study Population 1: PWP (open for recruitment) 1. Meet Movement Disorder Society (MDS) Clinical Diagnostic Criteria for Parkinson's Disease: probable diagnosis. 2. Willingness to undergo genetic testing, and choose to be informed of genetic testing results for GBA, LRRK2 and 5 additional PD related genes (SNCA, VPS35, PRKN, PINK-1, PARK7). 3. Capacity to give full informed consent in writing or electronically, and have read and signed the informed consent forms (ICFs) based on site clinician's determination. 4. Able to perform study activities (including completion of either online, in-person or paper surveys). Study Population 2: People at risk of developing PD (not open for recruitment) 1. Family members of Study Population 1 may be invited to participate in the study if confirmatory genetic testing is deemed necessary by the genetic testing laboratory.

Exclusion Criteria

  1. Diagnosis of an atypical parkinsonian disorder (i.e., multiple system atrophy, progressive supranuclear palsy, dementia with Lewy bodies, corticobasal syndrome), including that due to medications, metabolic disorders, encephalitis, cerebrovascular disease, or normal pressure hydrocephalus. 2. Individuals who have received a blood transfusion within the past 3 months. 3. Individuals who have active hematologic malignancies such as lymphoma or leukemia. 4. Individuals who have had a bone marrow transplant within the past 5 years. 5. Under the age of 18

Study Design

Phase
N/A
Study Type
Interventional
Allocation
N/A
Intervention Model
Single Group Assignment
Intervention Model Description
All participants will undergo genetic counseling service post-genetic testing either locally or through central services.
Primary Purpose
Screening
Masking
None (Open Label)

Recruiting Locations

University of Colorado
Denver, Colorado 80045
Contact:
Robbie Cummins
robbie.cummins@cuanschutz.edu

Aventura Neurologists-Visionary Investigators Network
Aventura, Florida 33180
Contact:
Jonathan Palmquist
jpalmquist@visionaryinvestigators.com

St. Elizabeth's Medical Center
Boston, Massachusetts 02136
Contact:
Kaitlyn Ramsey
kaitlyn.ramsey@steward.org

Beth Israel Deaconess Medical Center (BIDMC)
Boston, Massachusetts 02215
Contact:
Hannah Babcock
hbabcock@bidmc.harvard.edu

Inland Northwest Research
Spokane, Washington 99202
Contact:
Melissa Bixby Sanchez, MS
mbixby@inwresearch.com

More Details

NCT ID
NCT04994015
Status
Recruiting
Sponsor
Parkinson's Foundation

Study Contact

Kamalini Ghosh, MS
1-800-473-4636
kghosh@parkinson.org

Detailed Description

The purpose of this study is to develop a central repository for PD-related genomic data by individuals who consent to deposit their data and bank their residual DNA obtained through clinical genetic testing for future research use.

Notice

Study information shown on this site is derived from ClinicalTrials.gov (a public registry operated by the National Institutes of Health). The listing of studies provided is not certain to be all studies for which you might be eligible. Furthermore, study eligibility requirements can be difficult to understand and may change over time, so it is wise to speak with your medical care provider and individual research study teams when making decisions related to participation.