Online platform re-launches to facilitate partnership between researchers and Charcot-Marie-Tooth and Inherited Neuropathies patients to discover treatments for the disease which currently lacks therapeutic options to accelerate improved treatments and care
- Online platform re-launches to facilitate partnership between researchers and Charcot-Marie-Tooth and Inherited Neuropathies patients to discover treatments for the disease which currently lacks therapeutic options to accelerate improved treatments and care
- Online surveys aim to collect critical patient information from four initial surveys
- Behavioral Health Summit features highly-accredited thought leader, Lisa McCarthy, Co-founder of The Fast Forward Group
NEW YORK, Sept. 20, 2018 /PRNewswire/ -- Hereditary Neuropathy Foundation (HNF) today announced it is launching an online clinical study to accelerate research on Charcot-Marie-Tooth (CMT) disease and Inherited Neuropathies (IN). 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. Additionally, HNF is announcing their 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.
Join GRIN because treatments begin with you! Learn more:
Register for the Patient-Centered CMT Behavioral Health Summit here.
About Online Patient Clinical Study: GRIN
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. GRIN will also serve as a patient recruitment source for researchers and industry who are conducting clinical trials.The study is open to anyone 18 or older worldwide with CMT/IN, and aims to recruit tens of thousands of participants to amplify the patient voice in research and care. Initially, there are four, separate surveys: Natural History Study, Respiratory Dysfunction, Medical Cannabis, and Voice-Activated Surveys regarding the impact of the disease.
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,” said Allison Moore, Founder/CEO of HNF.
About the Patient-Centered Behavioral Health Summit
This year’s annual Patient-Centered Summit will be a game-changer experience for CMT patients and families, with a strong focus on behavioral and emotional health. “We often hear so much in regards to the physical aspects of disease and disability, but very little on how it impacts our mental well-being, which for many can be more devastating. Our goal with this summit is to provide a curated “CMT Toolbox” that attendees can apply to their daily lives for increased fulfillment and wellness across all avenues.” Estela Lugo, HNF Medical Outreach Manager.
The day will begin with an interactive empowerment session, “Fuel Your Confidence” developed specifically for the CMT community by highly-accredited thought leader, Lisa McCarthy, co-founder of The Fast Forward Group. Attendees will also learn how surgery outcomes can affect behavioral health from expert CMT orthopedic surgeon, Glenn B. Pfeffer, MD. 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 dive deeper into improving lifestyle, nutrition, confidence, and social interactions.
About Charcot-Marie-Tooth (CMT)
CMT is a progressive neuromuscular disease affecting 1 in 2500 people worldwide, with early signs including high arched feet, curled toes, and claw-like hands. Many of these signs begin subtly and may go undiagnosed for years, leading to legs and arms becoming deformed and difficult to use. Those with CMT often lose the ability to walk and may become dependent upon assistive devices to remain mobile. There is no cure. To date, over 100 mutated genes associated with CMT have been identified with more being discovered each year.
About the Hereditary Neuropathy Foundation (HNF)
HNF, a non-profit 501(c) 3 organization whose mission is to increase awareness and accurate diagnosis of CMT and IN, support patients and families with critical information to improve quality of life, and fund research that will lead to treatments and cures. HNF developed the Therapeutic Research in Accelerated Discovery (TRIAD) program, a collaborative effort with academia, government and industry, to develop treatments for CMT. TRIAD involves many groups that span the drug discovery, drug development and diagnostics continuum.
Media contact: Allison Moore - allison@hnf-cure.org; (212) 722-8396
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SOURCE Hereditary Neuropathy Foundation
