Innovative Recruitment Strategies Increase Diversity of Participation in the Fox Insight Longitudinal Cohort

Neurology(2019)

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摘要
Objective: 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. Background: 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. Design/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). Results: 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). Conclusions: 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. Disclosure: Dr. Dobkin has nothing to disclose. Dr. Amondikar has nothing to disclose. Dr. Caspell-Garcia has nothing to disclose. Dr. Barnes has nothing to disclose. Dr. Bataille has nothing to disclose. Dr. Chahine has nothing to disclose. Dr. Katz has nothing to disclose. Dr. Kopil has nothing to disclose. Dr. Marras has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Grey Matter Technologies LLC. Dr. Melnick has nothing to disclose. Dr. Schwieger has nothing to disclose. Dr. Siddiqi has nothing to disclose. Dr. Smolensky has nothing to disclose. Dr. Standaert has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Serina Therapeutics, Abbvie Inc., the Michael J. Fox Foundation for Parkinson Research, The International Parkinson Disease and Movement Disorder Society, The Parkinson Foundation, the National Institutes of Health, Oregon Health Sciences University, Voyager Therapeutics, Blue Rock Therapeutics, Clintrex LLC, Revivo Therapeutics, Sanofi-Adventis Research and Development, and US Department of Justice. Dr. Standaert has received license feed payments, royalties, or contractual rights from McGraw Hill, Inc. Dr. Standaert has received research support from Abbvie, Inc., Avid Radiopharmaceuticals, the American Parkinson Disease Association, the Michael J. Fox Foundation for Parkinson Research, Alabama Department of Commerce, the Bachmann-Strauss Dystonia; Parkinson Foundation, and NIH grants. Dr. Tanner has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Adamas, Neurocrine, Photopharmics, Biotie Therapeutics, Alexza, 23andMe, INTEC Pharma, Voyager Therapeutics, Grey Matter Technologies LLC. Dr. Tanner has received research support from BioElectron, Roche.
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