Partnership Seeks to Develop and Validate Web-Based Assessment Tools to Revolutionize the Way Parkinson’s Disease Clinical Studies are Conducted
MOUNTAIN VIEW & SUNNYVALE, Calif. — May 14, 2008 –
23andMe, a privately- held personal genetics company, and The Parkinson’s Institute and Clinical Center (“Parkinson’s Institute”) today announced a research initiative under which Parkinson’s Institute patients, with financial support from The Michael J. Fox Foundation, will enroll in the 23andMe Personal Genome Service™ to support the development of advanced methods for clinical and epidemiologic research for Parkinson’s disease.
The new research initiative is designed to improve current methods of collecting information for Parkinson’s research by leveraging the internet to dramatically expand the involvement of Parkinson’s patients in clinical research and increase the frequency and quality of patient data collection. Specifically:
- Together, 23andMe and the Parkinson’s Institute will design and validate web-based clinical assessment tools that can be administered to online communities.
- 23andMe will establish a social networking platform to facilitate the development of communities and research projects based on common traits of Parkinson’s disease patients.
- All participating Parkinson’s Institute patients will be enrolled in the 23andMe Personal Genome Service™ and will provide a saliva sample for a comprehensive genome scan generating more than 580,000 data points per patient.
- Parkinson’s Institute patients will provide specific information and insights that will include their individual environmental exposures, family history, disease progression and treatment response.
- Patients’ risk factor and clinical data collected through the newly developed and validated web-based tools will then be merged with their genetic data to conduct research on Parkinson’s disease.
- New surveys will be developed and administered to the growing cohort of patients, generating new risk factor and clinical data for comparison with the existing genetic data.
- Through the deployment of an innovative approach to clinical research information gathering utilizing web-based tools, the initiative will help to expand the involvement of Parkinson’s disease patients in clinical research and increase the frequency and uniformity of patient data collection.
The existing model for collecting patient information does not effectively identify genetic and environmental causes of Parkinson’s disease, or novel, transformative therapies for Parkinson’s disease patients, and requires: multiple patient visits to a limited number of skilled clinical sites; time and distant prohibitive visits; costly and labor-intensive on-site efforts. Furthermore, the existing model for clinical research does not have access to a large enough pool of study participants to identify the cause and early indicators of Parkinson’s disease.
“This partnership represents the basis for ‘Research 2.0’, a new research architecture that web-enables validated diagnostic procedures and combines them with genetic profiles of Parkinson’s patients,” said Linda Avey, co-founder of 23andMe. “By building a social network for the Parkinson’s disease community, and combining it with the world-class expertise of Parkinson’s Institute researchers, we hope to establish an entirely new paradigm for how genetic research is conducted that actively involves the patient.”
Katie Hood, CEO of The Michael J. Fox Foundation, said, “Our Foundation sees vast potential in Internet and Web-based technologies to benefit people with Parkinson’s by accelerating the development of diagnostic tools and transformative treatments for Parkinson’s disease.” Ms. Hood added, “23andMe and the Parkinson’s Institute are ideally suited partners to harness the potential of Web-based approaches to modernize clinical research by essentially bringing the clinician into the patient’s home.”
Dr. J. William Langston, Scientific Director and Founder of The Parkinson’s Institute and Clinical Center said, “The potential value stemming from a centralized database of Parkinson’s patient information will help us investigate environmental factors correlated to genetic profiles and clinical outcomes in a way that has never been possible before. If successful, this work could dramatically accelerate our research on finding the cause and better treatments for the disease.”
“Because geographic boundaries are removed, for Parkinson’s patients around the world, this project represents a novel and exciting way for them to connect in a meaningful way that not only benefits them on an individual level but could have tremendous impact on our understanding of this disease,” said Piu Chan, MD, PhD, Professor and Director of the Beijing Institute of Geriatrics of Xuanwu Hospital, Beijing China. Dr. Chan is a fellow collaborator of the Parkinson’s Institute and also spent several years there as a postdoctoral Fellow and Senior Researcher.
About The Parkinson’s Institute and Clinical Center
The Parkinson’s Institute and Clinical Center is America’s only independent non- profit organization that provides basic and clinical research, clinical trials and a comprehensive movement disorder patient clinic for Parkinson’s disease, all under one roof.
For The Parkinson’s Institute and Clinical Center:
Ken Toren, Executive Director
23andMe, Inc. is the leading consumer genetics and research company. Founded in 2006, the mission of the company is to help people access, understand and benefit from the human genome. The company was named by TIME as a “Genius Company” in 2018, and featured as Fast Company's #2 Most Innovative Health Company in 2018. 23andMe has millions of customers worldwide, with more than 80 percent of customers consented to participate in research. 23andMe, Inc. is located in Sunnyvale, CA. More information is available at www.23andMe.com.