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Abstract Details

Innovative Recruitment Strategies Increase Diversity of Participation in the Fox Insight Longitudinal Cohort
Movement Disorders
S16 - Huntington's Disease: From Bench to Clinical Trials (2:28 PM-2:39 PM)
009

The Michael J. Fox Foundation for Parkinson’s Research (MJFF) recently launched Fox Insight – a virtual, longitudinal, observational study collecting patient reported outcome data (e.g., physical and emotional health, quality of life, healthcare utilization) from 125,000 people with PD and healthy controls over 5 years. 25,000 participants have enrolled to date.

In order to truly advance Parkinson's disease (PD) research and clinical care, innovative recruitment strategies are required to accurately capture patient reported outcomes from diverse segments of the PD community. The objectives of this project were to examine whether specific digital marketing campaigns were associated with increased targeted enrollment in the Fox Insight Study (early and late stage disease, underrepresented geographic areas), compared to a baseline period with no special promotions, and to further describe the clinical and demographic characteristics of the PD samples recruited via different methods.

A baseline (pre-intervention) period, identified as 6-weeks with no special promotion (Group 1), was compared to unique Facebook and Google ad campaigns targeting specific PD subgroups [early/late stage PD, those living in underrepresented geographic areas (Groups 2-4)], and to a more general online promotion of the study (Group 5).

Each digital campaign was successful in recruiting more total subjects compared to baseline, while only one (targeting underrepresented geographic areas based on zip code) was successful in recruiting a significantly higher proportion of the targeted population. The five groups differed significantly on key variables. For example, compared to baseline, early and late stage PD focused campaigns recruited a more diverse population overall, with respect to demographics (more low-income, less highly educated, less prior clinical participation, higher proportion of Hispanic/Latino participants) and medical history (more medical comorbidities).  

 Targeted digital recruitment methods have potential to diversify the demographic and clinical composition of the Fox Insight cohort and those enrolled in PD research studies at-large.  

Authors/Disclosures
Roseanne D. Dobkin, PhD (Rutgers University)
PRESENTER
Dr. Dobkin has nothing to disclose.
No disclosure on file
No disclosure on file
Janel Fedler, PhD Dr. Fedler has nothing to disclose.
No disclosure on file
Lana Chahine, MD, FAAN Dr. Chahine has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Gray Matters Technology. The institution of Dr. Chahine has received research support from UPMC. The institution of Dr. Chahine has received research support from MJFF. The institution of Dr. Chahine has received research support from Denali/Biogen. Dr. Chahine has received publishing royalties from a publication relating to health care.
No disclosure on file
Catherine Kopil No disclosure on file
Connie C. Marras, MD (Toronto Western Hospital) Dr. Marras has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Neurocrine Biosciences. The institution of Dr. Marras has received research support from Theravance Inc. The institution of Dr. Marras has received research support from Centogene.
No disclosure on file
No disclosure on file
No disclosure on file
No disclosure on file
David G. Standaert, MD, PhD, FAAN (Univ of Alabama - Dept of Neurology) Dr. Standaert has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Abbvie, Inc. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Curium Pharma. Dr. Standaert has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Gray Matter Technologies. Dr. Standaert has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi-Aventis. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Theravance, Inc. Dr. Standaert has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for International Parkinson and Movement Disorder Society. The institution of Dr. Standaert has received research support from Abbvie, Inc. The institution of Dr. Standaert has received research support from American Parkinson Disease Association. The institution of Dr. Standaert has received research support from Department of Defense. The institution of Dr. Standaert has received research support from National Institutes of Health. Dr. Standaert has received publishing royalties from a publication relating to health care. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Speaker with Case Western Reserve. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Consultant with California Pacific Medical Center. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Course Instructor with International Parkinson Disease and Movement Disorders Society. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Reviewer with National Institutes of Health. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Consultant with Parkinson Study Group. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Speaker with UCSD. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Reviewer with Warren Alpert Foundation. Dr. Standaert has a non-compensated relationship as a Chair, Scientific Advisory Board with American Parkinson Disease Association that is relevant to AAN interests or activities.
Caroline M. Tanner, MD, PhD, FAAN (University of California San Francisco, Weill Institute for Neurosciences) Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Evidera. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Neurocrine. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Jazz Pharmaceuticals/Cavion. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Bial . Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Supernus. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche Genentech. The institution of Dr. Tanner has received research support from Gateway LLC. The institution of Dr. Tanner has received research support from Roche\Genentech. The institution of Dr. Tanner has received research support from Michael J Fox Foundation . The institution of Dr. Tanner has received research support from National Institute of Health . The institution of Dr. Tanner has received research support from Department of Defense. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving as a Faculty, CME presentation with Medscape /WebND.