Web-based Genetic Research on Parkinson's Disease

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT01351467
Recruitment Status : Active, not recruiting
First Posted : May 11, 2011
Last Update Posted : January 11, 2018
Michael J. Fox Foundation for Parkinson's Research
The Parkinson's Institute
Information provided by (Responsible Party):
23andMe, Inc.

Brief Summary:
The purpose of this study is to examine how genes and environment affect risk for Parkinson's disease.

Condition or disease
Parkinson's Disease

Detailed Description:
23andMe has created a web-based Parkinson's research initiative to understand the genetic associations found between Parkinson's patients' DNA and their disease. To learn more, visit: You can participate in this research initiative without leaving home. If you are eligible to participate, we will send you an in-home 23andMe DNA kit at no cost. We will ask you short online surveys (15-20) about your Parkinson's journey, symptoms, and response to treatment. Enrollment is on-going and open to individuals who have been diagnosed with Parkinson's disease and are residents of the U.S. Participants receive access to ancestry information and uninterpreted genetic data. Participants will also receive regular updates on our research efforts and findings.

Study Type : Observational
Estimated Enrollment : 25000 participants
Observational Model: Case-Control
Time Perspective: Cross-Sectional
Official Title: Ongoing, Web-Based Genome-Wide Association Studies for Targeted Disease Initiatives
Study Start Date : April 2009
Estimated Primary Completion Date : January 2025
Estimated Study Completion Date : January 2025

Resource links provided by the National Library of Medicine

Parkinson's disease patients
People diagnosed with Parkinson's disease by a physician

Primary Outcome Measures :
  1. Saliva DNA test and online surveys with questions about Parkinson's disease experience, symptoms and response to treatment [ Time Frame: Intermittent surveys every 6 months for up to 24 months ]
    We want to learn how genes and environment could play role in Parkinson's disease risk and progression

Biospecimen Retention:   Samples With DNA
Saliva samples are collected for DNA analysis

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Community Sample

Inclusion Criteria:

  • diagnosis of Parkinson's disease by a physician

Exclusion Criteria:

  • diagnoses other than Parkinson's, including:
  • progressive supranuclear palsy (PSP)
  • multiple system atrophy (MSA)
  • Shy-Drager syndrome
  • spinal cerebella ataxia (SCA)
  • atypical parkinsonism
  • parkinsonism due to medications, drug-induced parkinsonism
  • vascular parkinsonism
  • frontotemporal dementia with parkinsonism

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT01351467

United States, California
Mountain View, California, United States, 94043
Sponsors and Collaborators
23andMe, Inc.
Michael J. Fox Foundation for Parkinson's Research
The Parkinson's Institute

Additional Information:
Publications of Results:
Lill CM, Roehr JT, McQueen MB, Kavvoura FK, Bagade S, Schjeide BM, Schjeide LM, Meissner E, Zauft U, Allen NC, Liu T, Schilling M, Anderson KJ, Beecham G, Berg D, Biernacka JM, Brice A, DeStefano AL, Do CB, Eriksson N, Factor SA, Farrer MJ, Foroud T, Gasser T, Hamza T, Hardy JA, Heutink P, Hill-Burns EM, Klein C, Latourelle JC, Maraganore DM, Martin ER, Martinez M, Myers RH, Nalls MA, Pankratz N, Payami H, Satake W, Scott WK, Sharma M, Singleton AB, Stefansson K, Toda T, Tung JY, Vance J, Wood NW, Zabetian CP; 23andMe Genetic Epidemiology of Parkinson's Disease Consortium; International Parkinson's Disease Genomics Consortium; Parkinson's Disease GWAS Consortium; Wellcome Trust Case Control Consortium 2), Young P, Tanzi RE, Khoury MJ, Zipp F, Lehrach H, Ioannidis JP, Bertram L. Comprehensive research synopsis and systematic meta-analyses in Parkinson's disease genetics: The PDGene database. PLoS Genet. 2012;8(3):e1002548. doi: 10.1371/journal.pgen.1002548. Epub 2012 Mar 15.
Nalls MA, Pankratz N, Lill CM, Do CB, Hernandez DG, Saad M, DeStefano AL, Kara E, Bras J, Sharma M, Schulte C, Keller MF, Arepalli S, Letson C, Edsall C, Stefansson H, Liu X, Pliner H, Lee JH, Cheng R; International Parkinson's Disease Genomics Consortium (IPDGC); Parkinson's Study Group (PSG) Parkinson's Research: The Organized GENetics Initiative (PROGENI); 23andMe; GenePD; NeuroGenetics Research Consortium (NGRC); Hussman Institute of Human Genomics (HIHG); Ashkenazi Jewish Dataset Investigator; Cohorts for Health and Aging Research in Genetic Epidemiology (CHARGE); North American Brain Expression Consortium (NABEC); United Kingdom Brain Expression Consortium (UKBEC); Greek Parkinson's Disease Consortium; Alzheimer Genetic Analysis Group, Ikram MA, Ioannidis JP, Hadjigeorgiou GM, Bis JC, Martinez M, Perlmutter JS, Goate A, Marder K, Fiske B, Sutherland M, Xiromerisiou G, Myers RH, Clark LN, Stefansson K, Hardy JA, Heutink P, Chen H, Wood NW, Houlden H, Payami H, Brice A, Scott WK, Gasser T, Bertram L, Eriksson N, Foroud T, Singleton AB. Large-scale meta-analysis of genome-wide association data identifies six new risk loci for Parkinson's disease. Nat Genet. 2014 Sep;46(9):989-93. doi: 10.1038/ng.3043. Epub 2014 Jul 27.

Responsible Party: 23andMe, Inc. Identifier: NCT01351467     History of Changes
Other Study ID Numbers: 23andMe_PD001
First Posted: May 11, 2011    Key Record Dates
Last Update Posted: January 11, 2018
Last Verified: January 2018

Keywords provided by 23andMe, Inc.:
genome wide association

Additional relevant MeSH terms:
Parkinson Disease
Parkinsonian Disorders
Basal Ganglia Diseases
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Movement Disorders
Neurodegenerative Diseases