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Abstract Details

Recruitment of a Virtual Nationwide Cohort of LRRK2 G2019S Carriers
Movement Disorders
P2 - Poster Session 2 (8:00 AM-9:00 AM)
3-015
To describe initial recruitment of a nationwide cohort of LRRK2 G2019S carriers, who are 23andMe research participants with and without Parkinson's disease (PD).
LRRK2 mutations are among the most common causes of genetic PD, and LRRK2 is a promising target for the development of disease-modifying therapeutics for PD.  Enrollment of a sufficient number of carriers into clinical trials using traditional recruitment methods and infrastructure may be challenging. Collaboration with 23andMe, Inc., a personal genetics company, will allow us to reach more individuals.  Virtual visits may reduce geographic and disability barriers to participation. 
We will enroll approximately 300 LRRK2 G2019S carriers (250 without PD, 50 with PD) who are 23andme research participants in this 36-month virtual, prospective, observational study. Enrollment is stratified by age—approximately half of each disease status group will be over 60—to ensure diversity in our cohort and increase the likelihood of phenoconversion.  Participants complete annual virtual visits, including standard patient- and clinician-reported outcome measures (modified for remote assessment). Visits are conducted by a centralized research team at a single site. A Steering Committee including individuals with PD and LRRK2 G2019S carriers oversees study progress.
As of 10/21/2019, 1,892 individuals have been invited by 23andMe to participate in this study and 179 (9.5%) have consented to be contacted. Over four months, 108 individuals from 28 different states have enrolled in the study and 94 (30 with self-reported PD, 64 without) have completed the baseline visit.  Nearly 80% of self-reported non-manifest participants are first-time PD or LRRK2 research participants.
Recruitment has been rapid. The study is poised to prospectively characterize and engage a large cohort of carriers, with the potential promise of transforming the conduct of clinical trials in genetic medicine. This study is funded under the University of Rochester Udall Center (NINDS P50NS108676).
Authors/Disclosures

PRESENTER 		No disclosure on file
Ruth Schneider, MD, FÂ鶹´«Ã½Ó³»­ (University of Rochester) Dr. Schneider has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Escape Bio. The institution of Dr. Schneider has received research support from The Michael J. Fox Foundation. The institution of Dr. Schneider has received research support from NIH. The institution of Dr. Schneider has received research support from Acadia Pharmaceuticals. The institution of Dr. Schneider has received research support from CHDI. The institution of Dr. Schneider has received research support from Biohaven Pharmaceuticals. The institution of Dr. Schneider has received research support from Parkinson Study Group. The institution of Dr. Schneider has received research support from The Michael J. Fox Foundation. The institution of Dr. Schneider has received research support from Bial. Dr. Schneider has received personal compensation in the range of $500-$4,999 for serving as a Telemedicine Evaluator with Parkinson's Foundation.
Stella Jensen-Roberts Ms. Jensen-Roberts has nothing to disclose.
Helen Rowbotham No disclosure on file
No disclosure on file
No disclosure on file
Katherine D. Amodeo, MD (Westchester Medical Center) The institution of Dr. Amodeo has received research support from Roche. The institution of Dr. Amodeo has received research support from EIP Pharma. The institution of Dr. Amodeo has received research support from Acadia. The institution of Dr. Amodeo has received research support from MJFF. The institution of Dr. Amodeo has received research support from NINDS.
Saloni Sharma, MBBS Dr. Sharma has nothing to disclose.
Roy Alcalay, MD (Columbia University) Dr. Alcalay has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Genzyme/Sanofi. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Gain Therapeutics. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Vanqua Bio. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Takeda. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biohaven. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Capsida. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Servier. The institution of Dr. Alcalay has received research support from Michael J. Fox Foundation. The institution of Dr. Alcalay has received research support from Parkinson's Foundation. The institution of Dr. Alcalay has received research support from Silverstein Foundation. Dr. Alcalay has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant with Parkinson's Foundation.
Paul Cannon No disclosure on file
E. Ray Dorsey, MD, MBA (University of Rochester) Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Seelos Therapeutics. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Eden McCallum, LLP. Dr. Dorsey has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Genentech/Roche. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biohaven Pharmaceuticals. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for WebMD. Dr. Dorsey has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for BioSensics. Dr. Dorsey has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Mediflix. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Cerevance. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Kairos Cinema, LLC. Dr. Dorsey has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Mitsubishi Tanabe Pharma America Inc.. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for HanAll. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Dorsey has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Advarra. Dr. Dorsey has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Medrhythms. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for ANA. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for HMP Â鶹´«Ã½Ó³»­, LLP. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for ADIVO Associates France. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for University of Toronto. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Philadelphia Neurological Society. Dr. Dorsey has stock in Included Health. Dr. Dorsey has stock in Mediflix. Dr. Dorsey has stock in SemCap. Dr. Dorsey has stock in Synapticure. The institution of Dr. Dorsey has received research support from NIH/NINDS. The institution of Dr. Dorsey has received research support from Burroughs Wellcome . The institution of Dr. Dorsey has received research support from Michael J. Fox Foundation - Fox Insight. The institution of Dr. Dorsey has received research support from Michael J. Fox Foundation - Emerald. The institution of Dr. Dorsey has received research support from B. Thomas Golisano Foundation. The institution of Dr. Dorsey has received research support from Emerald Innovations, Inc.. The institution of Dr. Dorsey has received research support from Photopharmics Inc.. The institution of Dr. Dorsey has received research support from Averitas Pharma Inc.. The institution of Dr. Dorsey has received research support from DOD/Army Medical Research Acquisition Activity. The institution of Dr. Dorsey has received research support from NIH/NINDS.
Robert G. Holloway, MD, MPH, FÂ鶹´«Ã½Ó³»­ (University of Rochester Medical Center) Dr. Holloway has nothing to disclose.