Alliance for research in hispanic multiple sclerosis registry as a facilitator to clinical research participation

Patient registries can facilitate recruitment of underrepresented groups to research studies. The Alliance for Research in Hispanic MS (ARHMS) registry was established to advance knowledge of multiple sclerosis (MS) in people of Hispanic background.

To evaluate the ARHMS registry as a recruitment platform and identify barriers to research participation.

ARHMS enrollees were randomly sampled and contacted for recruitment to an access to care study (AcT-MS). Demographic (site, age, sex, language, place of birth) and clinical (disease duration) data were collected from the ARHMS database. Number and outcomes of contact attempts and reasons given for declining to participate were recorded. Contacted and not contacted groups were compared. Multivariable logistic regression assessed factors associated with participation in AcT-MS.

We attempted to contact 809 enrollees. Most were female (73.6%) with mean±SD age 48.4 ± 13.5 years and disease duration 16.5 ± 9.8 years. We successfully contacted 516 (63.8%) after a median of 2 (range 1-4) attempts. Primarily Spanish-speaking enrollees were less likely to be contacted than primary English-speakers (55.1% vs. 72.0%, p < 0.001). 500 of 516 (96.9%) contacted enrollees participated in AcT-MS, with time constraints reported by 9 of 16 who declined. In multivariable analysis, Spanish primary language [0.46 (0.28-0.75); p = 0.002] and greater years since ARHMS enrollment [0.82(0.76-0.89); p < 0.001] were associated with lower odds of participation.

These results suggest that recent engagement in the ARHMS registry facilitates ongoing research participation. Further research should focus on building retention strategies and culturally-tailored approaches to sustain engagement in Hispanic populations.