Hereditary Neuropathy Foundation (HNF) announces it is launching an online clinical study to accelerate research on Charcot-Marie-Tooth (CMT) disease and Inherited Neuropathies (IN).
In addition, it announces its Patient-Centered CMT Behavioral Health Summit to be held on Saturday, September 29, 2018, at the College Park Marriott Hotel and Conference Center in Hyattsville, Md.
The Global Registry for Inherited Neuropathies (GRIN) is being re-launched on a more user-friendly, dynamic online platform designed to create a true partnership between people with CMT/IN and researchers to accelerate breakthroughs and discover treatments for the disease which currently lacks any therapeutic options.
Via the study, which is open to anyone 18 or older worldwide with CMT/IN, HNF aims to collect critical information from a large, diverse cohort of patients providing researchers, drug makers, regulators, and payors critical insight into the lived experience, genetics and variability of CMT.
Initially, there are four, separate surveys: Natural History Study, Respiratory Dysfunction, Medical Cannabis, and Voice-Activated Surveys regarding the impact of the disease, explains a media release from Hereditary Neuropathy Foundation.
“By incorporating patient perspectives, we are enabling an enriched understanding of the experience of living with CMT. This in turn is a robust tool to de-risk research investment by industry and to facilitate systematic research and therapy development to improve patient outcomes and endpoints. GRIN has the immense potential to accelerate and improve therapy development,” says Allison Moore, Founder/CEO of HNF, in the release.
The annual Patient-Centered Summit, the release continues, will begin with an interactive empowerment session, “Fuel Your Confidence” developed specifically for the CMT community by Lisa McCarthy, co-founder of The Fast Forward Group. IN addition, CMT orthopedic surgeon Glenn B. Pfeffer, MD, will discuss how surgery outcomes can affect behavioral health.
Two breakout workshops, “Assertiveness and CMT,” moderated by Lainie Ishbia, founder of Trend-Able, and “Nutrition and CMT,” moderated by Alana Kessler, registered dietitian and holistic health coach, will discuss how to improve lifestyle, nutrition, confidence, and social interactions.
For more information and to register, visit Hereditary Neuropathy Foundation.
[Source(s): Hereditary Neuropathy Foundation, PR Newswire]