Assessing the feasibility, theoretical interest, and observed behaviors of adding genetic data to a patient-reported multiple sclerosis registry.

BACKGROUND AND OBJECTIVES: We aimed to assess the feasibility and acceptability of self-collected saliva for genetics from participants of a registry and determine whether responses to hypothetical questions regarding sharing of genetic information reflected observed behaviors. METHODS: We conducted a cross-sectional study collecting saliva for a genetic study in the North American Research Committee on MS (NARCOMS) registry. We linked participants to a prior survey for a subset of participants with responses, to examine factors associated with concordance between consent status and hypothetical willingness to share genetic information using logistic regression. RESULTS: Of ∼6200 participants contacted, 1227 expressed interest in the genetic study, 763 consented (62.2% of interested, ∼10% of those contacted) and most returned saliva samples (>80% of those consented). We found low agreement between the genetic study response and willingness to link genetic data (adjusted kappa = 0.186, standard error = 0.029). Multivariable regression identified no factors significantly associated with concordance between consent status and hypothetical willingness to share genetic information, though findings may reflect limited power. CONCLUSION: Among participants who expressed interest, most were willing to provide saliva for genetics studies, though hypothetical sharing of genetic information did not reflect actual behaviors, and overall participation represented a minority of those contacted.