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Parkinson's Foundation PD GENEration Genetic Registry

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
18 Years and older
Sex
All sexes
Healthy volunteers
Not accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

Not stated in the study description — ask the study team about visits and procedures.

Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This study collects genetic data linked to Parkinson's disease for future research. It is open to people with Parkinson's disease who agree to genetic testing and to learn their results.

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

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • Have a likely diagnosis of Parkinson's disease that meets the study's medical guidelines.
  • Agree to genetic testing and to receive results for seven Parkinson's-related genes: GBA, LRRK2, SNCA, VPS35, PRKN, PINK-1, and PARK7.
  • Be able to understand and agree to join, as judged by the study clinician. Read and sign the consent forms on paper or electronically.
  • Be able to do study tasks, including surveys online, in person, or on paper.
  • The group for people at risk of Parkinson's is not open now. Family members of participants may be invited if the lab needs more genetic testing to confirm results.

Who can't join

  • Have a different disorder that causes Parkinson's-like symptoms, including symptoms caused by medicines or other medical conditions.
  • Have received a blood transfusion in the past 3 months.
  • Have an active blood cancer, such as lymphoma or leukemia.
  • Have had a bone marrow transplant in the past 5 years.
  • Be younger than 18.

Simplified for readability. The official criteria below are what the study team uses.

Official eligibility criteria

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 sites (63)

AL

AR

AZ

CA

CO

CT

FL

GA

HI

IA

IL

IN

KS

KY

LA

MA

MD

ME

MI

MN

NC

NJ

NM

NV

NY

OH

OR

PA

SC

TN

TX

UT

VA

WA

WI