HNF’s Inspire™ online discussion and support group: It’s so much more than a support group… It’s one more way HNF is spotlighting the patient voice.
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 9,300 patient and caregiver members and generated 100,000+ posts — real-world data that reveal important trends, themes, and gaps.
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”. 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 a FDA Externally-led Patient Focused Drug Development (EL-PFDD) Meeting and a Patient-Centered Behavioral Health Summit. Read the official “Voice of the Patient Report” from the FDA website here.
FDA & Amplifying 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 are uniquely positioned to create a successful, innovative partnership beyond the critical work of peer-to-peer support for patients and families affected by CMT.
CMT Safe Space - Best Shoes for High-Arched Feet? Thanks to all those who joined last week! Check out the latest topics on all things CMT:About CMT Safe Space When searching for support and answers to CMT questions, social media can be very beneficial. However, not...
When searching for support and answers to CMT questions, social media can be very beneficial. However, not everyone is on social media, and not everyone feels comfortable asking questions that friends and family may see…especially if they are more private in nature....
In 2009, HNF partnered with Inspire, a social network for health, to launch a CMT online support community.
The INSPIRE App is live, and we’re sharing a behind-the-scenes look at how it works to improve the CMT Community!
10 Reasons To Join The Inspire CMT Community Today!
Amanda Pool shares her experience with the online Inspire CMT Community.
HNF has partnered with Inspire to provide a safe online health and wellness community in which patients, families, friends, and caregivers connect with one another for support and information.