Cure JM Foundation 2017 Conference Breakout Sessions

Focus Group: Which Research Questions Matter Most to You

Focus Group AttendeesWritten by Mitali Dave, President, Cure JM Board of Directors

Cure JM continues to solicit input from our Cure JM community to refine our research priorities.  This past December, 138 Cure JM families answered an open ended survey on what research most matters to them.   The most common themes from this initial survey, beyond our #1 goal of finding a cure, were:

  • Identifying triggers for flare

  • Long term effects of treatment

  • Long term health outcomes

At the Cure JM Family Conference, a small group of JM parents gathered to share their perspectives in a more in-depth manner.  Pediatric rheumatologists, Dr. Colleen Correll from the University of Minnesota and Dr. Lisa Rider from the National Institutes of Health, facilitated this 1.5 hour discussion.  They kicked off the session by asking the group to clarify questions about the most common themes that surfaced from the survey, and then opened it up for additional research priorities.  

The next step will be to send out a second more detailed survey this spring (stay tuned!) to our Cure JM community to rate the relative importance of all the research priorities gathered from the initial survey and this group discussion. We can then share these patient-driven research priorities with the JM research community through our own medical network and through upcoming scientific meetings.