In Search
Advancing Research. Improving Recognition. Informing Care.
Developing approaches that support earlier identification and informed care for complex conditions. Through research, collaboration, and innovation, In Search advances efforts to improve recognition, diagnosis, and care.
FEATURED PROJECT
Provider Knowledge, Genetics Referral Patterns, and Diagnostic Delay in hEDS
This research examines patient perspectives on provider knowledge, genetics referral patterns, and diagnostic delay in hypermobile Ehlers-Danlos syndrome. The findings identify opportunities to improve earlier recognition, genetics referrals, and informed care.
Presented at the Ehlers-Danlos Society's Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes conference (Belgium, 2026).
RESEARCH AT A GLANCE
117
Survey participants
20.7
Mean years to diagnosis
36.3
Mean age at diagnosis
