METHODS: The Outcomes Research Advisory Board (ORAB) was created by Food Allergy Research & Education (FARE), comprised of key stakeholders charged with identifying areas of need and priority in FA research. With ORAB input, a measure was developed to assess perceptions of FA research priorities. This measure was completed by a national sample of FA researchers and non-researchers before the 2017 FARE Research Retreat.
RESULTS: Research retreat participants (n=107, 45 researchers, 62 non-researchers) completed the measure. Non-researchers included parents of food-allergic children (65%), individuals with FA (11%), and members of advocacy organizations (21%). The areas identified by researchers (R) versus non-researchers (NR) as priorities (% selecting area as top priority) included: development of desensitization treatment (R 46%, NR 30%, p=0.07), development of cure (R 30%, NR 28%), and product labeling research (R 7%, NR 14%). Although more non-researchers (10%) versus researchers (2%) identified psychosocial research as a priority, this was not significant (p=0.10). There were no significant differences in research priorities based on gender, educational level, having observed anaphylaxis, or having a first-degree relative with FA.
CONCLUSIONS: FA research priorities are aligned between researcher and patient communities in this initial assessment. Both groups place highest priority on developing treatments to lessen FA severity and curative therapies. Future studies are needed to explore how patient-centric outcomes may inform treatment research.