Home › Trials › NCT04994015

Genetic registry for Parkinson's disease data

Parkinson's Foundation PD GENEration Genetic Registry

Observational Parkinson's Foundation · NCT04994015

This study is collecting DNA samples from people with Parkinson's disease and their family members to see how genetic factors might help us understand and treat the condition better.

Quick facts

Study typeObservational
Enrollment25000 (estimated)
Ages18 Years and up
SexAll
SponsorParkinson's Foundation Academic / other
Locations56 sites (Birmingham, Alabama and 55 other locations)
Trial IDNCT04994015 on ClinicalTrials.gov

What this trial studies

This study aims to create a central repository for genomic data related to Parkinson's disease by collecting and banking DNA samples from individuals who consent to participate. Participants will undergo genetic testing for specific variants associated with Parkinson's disease, including GBA and LRRK2, among others. The collected data will be used for future research to enhance understanding and treatment of Parkinson's disease. The study is observational and focuses on individuals diagnosed with Parkinson's disease and their family members at risk of developing the condition.

Who should consider this trial

Good fit: Ideal candidates include individuals diagnosed with Parkinson's disease who are willing to undergo genetic testing and provide informed consent.

Not a fit: Patients diagnosed with atypical parkinsonian disorders may not benefit from this study.

Why it matters

Potential benefit: If successful, this initiative could significantly advance research into the genetic factors of Parkinson's disease, leading to improved diagnostics and treatment options.

How similar studies have performed: Other studies focusing on genetic data collection for neurodegenerative diseases have shown promise, indicating that this approach could yield valuable insights.

Eligibility criteria

Show full inclusion / exclusion 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

Where this trial is running

Birmingham, Alabama and 55 other locations

+6 more sites — see ClinicalTrials.gov for the full list.

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
View on ClinicalTrials.gov → Find more trials like this →
Conditions Parkinson's DiseaseGeneticsGenetic CounselingWhole Genome Sequencing
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.