Charcot Marie Tooth Disease - CMT Disease - Hereditary Neuropathy

Helios Brace Research Study

The Hereditary Neuropathy Foundation has partnered with the University of Nevada, Las Vegas, and Ortho Rehab Designs of Las Vegas to undertake a study of the effectiveness of the Helios Brace for persons with CMT. The research involves collecting data on gait, balance, muscle strength, and ground reaction force at the time patients are in Las Vegas to be fitted for the brace prior to its delivery. Data is being collected again at UNLV in Las Vegas after the braces have been delivered and subjects have had eight to ten weeks to adapt to them. During the follow-up visit to UNLV, six of the twenty subjects will be selected for additional data collection involving the use of motion capture equipment, and two of these six subjects will be fitted with a duplicate pair of experimental braces instrumented for purposes of measuring the engineering behavior of the brace. UNLV faculty members involved in the study are Professors Edward S. Neumann, Director of the Center for Disability and Applied Biomechanics, and Brendan O’Toole, Associate Professor of Mechanical Engineering. A call for subjects is posted below and describes additional details of the study and the requirements subjects must meet to be included.






Call for Subjects – Helios Brace Research Study

Subjects with Charcot-Marie-Tooth disease who plan on being fitted with the Helios Brace by Ortho Rehab Designs of Las Vegas are needed for a research study on the performance of the brace. The University of Nevada, Las Vegas (UNLV), needs approximately 20 subjects diagnosed with Charcot-Marie-Tooth disease who, over the next ten months, plan to be fitted with the Helios brace by Ortho Rehab Designs for the first time. The study will be undertaken at the University of Nevada, Las Vegas. It is being funded by the University of Nevada, Las Vegas, the Hereditary Neuropathy Foundation, and Ortho Rehab Designs. Subjects must be patients of Ortho Rehab Designs.

The research will involve collecting data on gait, balance, muscle strength, and ground reaction force at the time patients are in Las Vegas to be fitted for the brace prior to its delivery. Data will be collected again at UNLV in Las Vegas after the braces have been delivered and subjects have had eight to ten weeks to adapt to them. During the follow-up visit to UNLV, six of the twenty subjects will be selected for additional data collection involving the use of motion capture equipment, and two of these six subjects will be fitted with a duplicate pair of experimental braces instrumented for purposes of measuring the engineering behavior of the brace.

The Hereditary Neuropathy Foundation and UNLV will cover the costs of travel for the follow-up visit to Las Vegas. The study grant is not able to cover the cost of the Helios braces or the travel costs for initial fitting.

To participate in the study, subjects must

1. Meet the eligibility requirements of Ortho Rehab Designs for fitting the Helios (subjects for whom Ortho Rehab Designs determines that the Helios brace poses health or safety risks and declines to fit the brace will not be included in the study) and plan to obtain the brace;

2. Have bilateral foot drop;

3. Be age 18 or over;

4. Be able to walk, without risk of falling, a distance of at least 20 feet both with and without any kind of brace or orthosis, and subjects selected for motion capture must be able to walk a distance of 100 feet (walking with a cane or within parallel bars or accompanied by another individual to assist with balance is acceptable);

5. Have no physical conditions such as heart disease, respiratory impairment or other condition which would place a subject at risk from the walking activity which will be required during data collection;

6. Have no open sores or wounds or recent surgery on the legs or feet at the times of data collection; and

7. Agree to schedule a return visit to UNLV on a weekday after completing the adaptation instructions prescribed by Ortho Rehab Designs (this will be approximately eight to ten weeks after beginning the adaptation process, and will involve one day of data collection and up to two days of travel).

Interested individuals should contact Edward S. Neumann, PhD, PE, CP at the University of Nevada, Las Vegas (702 895-1072, or Edward.Neumann@unlv.edu) for further information.