An online monogenic XXXX discussion group: supporting families and fueling new research.

@entity1 @entity6
Many online support groups are available for @entity1 with rare disorders, but scant evidence is available on how effectively such groups provide useful information or valuable psychosocial support to their @entity1 . It is also unclear to what extent physicians and researchers may learn more about these disorders by participating in such groups. To formally assess the utility of the Kovler Monogenic Diabetes Registry online discussion group for @entity1 and families affected by KATP channel-related @entity6 in providing psychosocial and informational support and in identifying concerns unique to @entity1 with this rare form of @entity6 . We qualitatively analyzed all 1,410 messages from the online group that consisted of 64 @entity1 affected by KATP channel monogenic @entity6 and 11 researchers. We utilized the Social Behavior Support Code to assign each message to a support category and deductive thematic analysis to identify discussion topics addressed by each message. 44% of messages provided/requested informational support, whereas 31.4% of the messages contained psychosocial/emotional support. The most popular topics of postings to the forums were @entity6 treatment (503 messages) and neurodevelopmental concerns (472 messages). Participation in the discussion led researchers to modify survey instruments and design new studies focusing on specific topics of concern, such as sleep. We demonstrate that an online support group for a monogenic form of @entity6 is an effective informational tool that also provides psychosocial support. Participation by researchers and care providers can inform future research directions and highlight issues of @entity1 concern.
