Digital Assessments of Balance and Gait in People with Charcot-Marie-Tooth Disease Study

by | Jan 8, 2020 | 0 comments

HNF broke new ground with a new and exciting clinical study to help advance the improvement of treatment options utilizing digital technology to support clinicians on enhanced treatment outcomes and to add digital technology to clinical trial protocols. 

We are grateful to the patients at our annual Movement is Medicine™ Summit that made this study possible. 

The goal of the investigators at Arizona State University (ASU) was to utilize new and exciting digital technology – ProtoKinetics Zeno Walkway Gait Analysis System – to better understand the impact of CMT in a way that is meaningful to our everyday lives. Additionally, the Global Registry in Inherited Neuropathies pre-survey study questions will give us additional insight into how gait and mobility relates to pain, life satisfaction and social isolation.

“Having a deeper understanding of patient mobility can be obtained by incorporating quantitative and objective patient-centric information into routine care. This type of information can hopefully lead to better clinical trials.” – Dr. Mark Gudesblatt Neurologist and Clinical Research Leader in partnership with HNF South Shore Neurological Associates

Preliminary Analysis of the data suggest that confidence in balance and foot strength are associated with 6 minute walk distances. We are still in the process of analyzing and getting other data that could be useful. 

The study is open for one year. To qualify, please take a few minutes to join Digital Assessments of Balance and Gait in people with Charcot-Marie-Tooth Disease Pre-Study Survey. 

Help researchers help you and change the way that therapies are evaluated!

TAKE SURVEY HERE:

www.hnf-cure.org/registry/balance-andgait-pre-study-survey

 

“We are excited to be working with HNF to develop robust treatment protocols and analytical reports that cover a wide range of data-sets that will better define patients’ functional performance results with granular detail, thereby enhancing patient care and incorporating innovation solutions for CMT clinical trials.” – Dr. Edward Ofori Director of the Pathomechanics & Neuroimaging Laboratory Arizona State University

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Global Registry For Inherited Neuropathies: Your Questions Answered

Global Registry For Inherited Neuropathies: Your Questions Answered

Why are we asking you to join our registry? It’s simple. Without you, researchers won’t have the essential patient information to develop the drugs, gene therapy, and clinical trials for Charcot-Marie-Tooth and other inherited neuropathies.
This is why the Hereditary Neuropathy Foundation (HNF) created the Global Registry for Inherited Neuropathies (GRIN). The registry collects the historical, clinical, and genetic information on patients diagnosed with the various forms of inherited neuropathies to help advance therapy development for these debilitating disorders. We understand there may be some hesitation joining our registry. To help mitigate any concerns, we’ve have the answers to your most common questions.

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