RECRUITING

Parkinson's Foundation PD GENEration Genetic Registry

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Parkinson's DiseaseGeneticsGenetic CounselingWhole Genome Sequencing

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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

Official Title

Parkinson's Foundation PD GENEration Genetic Registry

Quick Facts

Study Start:2020-12-20
Study Completion:2025-06-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04994015

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Study Population 1: PWP (open for recruitment)
  2. 1. Meet Movement Disorder Society (MDS) Clinical Diagnostic Criteria for Parkinson's Disease: probable diagnosis.
  3. 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).
  4. 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.
  5. 4. Able to perform study activities (including completion of either online, in-person or paper surveys).
  6. 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.
  1. 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. 2. Individuals who have received a blood transfusion within the past 3 months.
  3. 3. Individuals who have active hematologic malignancies such as lymphoma or leukemia.
  4. 4. Individuals who have had a bone marrow transplant within the past 5 years.
  5. 5. Under the age of 18

Contacts and Locations

Study Contact

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

Principal Investigator

James Beck, PhD
PRINCIPAL_INVESTIGATOR
Parkinson's Foundation
Roy N Alcalay, MS, MD
PRINCIPAL_INVESTIGATOR
Tel Aviv Sourasky Medical Center, Columbia University Irving Medical Center

Study Locations (Sites)

MD First Research
Chandler, Arizona, 85286
United States
Barrow Neurological Institute
Phoenix, Arizona, 85013
United States
University of Arkansas
Fayetteville, Arkansas, 72701
United States
University of California San Diego (UCSD)
La Jolla, California, 92093
United States
University of California San Francisco (UCSF)
San Francisco, California, 94143
United States
Aventura Neurology - Visionary Investigators Network
Aventura, Florida, 33180
United States
Parkinson's Disease & Movement Disorder Center of Boca Raton
Boca Raton, Florida, 33486
United States
University of Florida
Gainesville, Florida, 32611
United States
University of Miami
Miami, Florida, 33131
United States
Cleveland Clinic Weston
Weston, Florida, 33331
United States
Morehouse College
Atlanta, Georgia, 30314
United States
The Queen's Health System
Honolulu, Hawaii, 96813
United States
University of Illinois-Chicago
Chicago, Illinois, 60607
United States
Rush University
Chicago, Illinois, 60612
United States
University of Chicago
Chicago, Illinois, 60637
United States
Northwestern University
Evanston, Illinois, 60208
United States
Indiana University
Indianapolis, Indiana, 46202
United States
University of Iowa
Iowa City, Iowa, 52242
United States
University of Kansas
Lawrence, Kansas, 66045
United States
University of Kentucky
Lexington, Kentucky, 40506
United States
Johns Hopkins
Baltimore, Maryland, 21218
United States
University of Maryland
College Park, Maryland, 20742
United States
Massachusetts General Hospital (MGH)
Boston, Massachusetts, 02114
United States
St. Elizabeth's Medical Center
Boston, Massachusetts, 02136
United States
Beth Israel Deaconess Medical Center (BIDMC)
Boston, Massachusetts, 02215
United States
Struthers Parkinson's Center - HealthPartners Park Nicollet
Golden Valley, Minnesota, 55427
United States
Rutgers University
New Brunswick, New Jersey, 08854
United States
New York University
New York, New York, 10017
United States
Mount Sinai
New York, New York, 10029
United States
Columbia University
New York, New York, 10033
United States
University of North Carolina - Chapel Hill
Chapel Hill, North Carolina, 27599
United States
Atrium Health
Charlotte, North Carolina, 28207
United States
University of Cincinnati
Cincinnati, Ohio, 45221
United States
Case Western Reserve University
Cleveland, Ohio, 44106
United States
Cleveland Clinic
Cleveland, Ohio, 44195
United States
Ohio State University
Columbus, Ohio, 43210
United States
Oregon Health and Science University
Portland, Oregon, 97239
United States
University of Pennsylvania
Philadelphia, Pennsylvania, 19104
United States
Thomas Jefferson University
Philadelphia, Pennsylvania, 19144
United States
Medical University of South Carolina
Charleston, South Carolina, 29425
United States
Vanderbilt University
Nashville, Tennessee, 37235
United States
Baylor College of Medicine
Houston, Texas, 77030
United States
University of Texas at San Antonio
San Antonio, Texas, 78249
United States
Virginia Commonwealth University
Richmond, Virginia, 23284
United States
Inland Northwest Research
Spokane, Washington, 99202
United States
Medical College of Wisconsin
Milwaukee, Wisconsin, 53226
United States

Collaborators and Investigators

Sponsor: Parkinson's Foundation

  • James Beck, PhD, PRINCIPAL_INVESTIGATOR, Parkinson's Foundation
  • Roy N Alcalay, MS, MD, PRINCIPAL_INVESTIGATOR, Tel Aviv Sourasky Medical Center, Columbia University Irving Medical Center

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2020-12-20
Study Completion Date2025-06-01

Study Record Updates

Study Start Date2020-12-20
Study Completion Date2025-06-01

Terms related to this study

Keywords Provided by Researchers

  • Genetics
  • Genetic Counseling
  • Whole Genome Sequencing

Additional Relevant MeSH Terms

  • Parkinson's Disease