In June 2019, Allison Moore, Founder/CEO, HNF and Judy Chandler, Director of Partnerships, Inspire, presented the poster “Partnership and progress for a rare disease community: How Inspire and the HNF collaborated to grow the CMT patient community and accelerate research”
In 2009, HNF partnered with Inspire, a social network for health, to launch a CMT online support community. The community has grown to more than 6,000 patient and caregiver members and generated 40,000+ posts — real-world data that reveal important trends, themes, and gaps. The poster illustrates how the partnership between HNF and Inspire contributed to several research and educational initiatives
Incorporating Pain as a Novel Research and Clinical Outcome Measure
Using pain-related conversations and resulting data from the CMT support community, HNF developed initiatives to understand the potential link between pain and CMT, including a patient-centered pain summit and a patient-reported IRB outcomes study through their patient registry, Global Registry for Inherited Neuropathies (GRIN). Pain is now a clinically relevant endpoint in CMT treatment and key outcome measure in CMT clinical trials.
Understanding Psycho-Social Components of CMT
HNF leveraged data and content from the CMT support community about the psycho-social components of the disease to develop questions for a Natural History Study and to plan an FDA Externally-led Patient Focused Drug Development (EL-PFDD) Meeting and a Patient-Centered Behavioral Health Summit.
Capturing the Patient Voice
HNF and Inspire collaborated to use voice-activated technology to capture the CMT patient experience. Results were shared at the EL-PFDD Meeting to help HNF describe the true burden of living with CMT and how patients view the risks and benefits of CMT treatments to inform the FDA, drug developers, and other key stakeholders.
Developed CMT Healthcare Provider Directory
In 2016, Inspire collaborated with HNF to design and analyze a healthcare provider (HCP) survey in the CMT support community. The survey received 225 responses and resulted in a national directory now over 1,500 providers across many disciplines who understand how to manage patients with CMT.
Inspire and HNF were uniquely positioned to create a successful, innovative partnership beyond the critical work of peer-to-peer support for patients and families affected by CMT.
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