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.