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Disability Severity Scale (DSI) and Hereditary Motor and Sensory Neuropathy Overall Disability Scale (HMSN-R-ODS)

NCT02194010 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 563

Last updated 2019-02-07

No results posted yet for this study

Summary

The purpose of this research study is to create and validate two patient reported outcome (PRO) questionnaires. PRO questionnaires ask questions that help to measure disability in patients with inherited neuropathies. These questionnaires ask questions about what participants think disability is for themselves or others with inherited neuropathies. These questionnaires are a useful tool when evaluating whether treatments are working in the day to day life of an individual, although there are currently no questionnaires available specifically for people who have Charcot Marie Tooth disease (CMT).

Conditions

  • Charcot Marie Tooth Disease
  • Inherited Peripheral Neuropathy

Sponsors & Collaborators

  • National Institute of Neurological Disorders and Stroke (NINDS)

    collaborator NIH

  • Charcot-Marie-Tooth Association

    collaborator OTHER

  • Muscular Dystrophy Association

    collaborator OTHER

  • University of Rochester

    collaborator OTHER

  • University of South Florida

    collaborator OTHER

  • University of Iowa

    lead OTHER

Principal Investigators

  • Michael E Shy, MD · Universit of Iowa

Eligibility

Min Age
10 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2014-04-30
Primary Completion
2019-02-28
Completion
2019-02-28

Countries

  • United States
  • United Kingdom

Study Locations

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Entities

Companies

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02194010 on ClinicalTrials.gov