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Patient Reported Outcomes Measures (PROM) in Carpal Tunnel Therapies in Patients With Inherited Neuropathies

NCT02788734 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 333

Last updated 2018-03-15

No results posted yet for this study

Summary

The purpose of this study is to learn about focal compressive median neuropathy at the wrist (Carpal Tunnel Syndrome) and outcomes of therapies (e.g. conservative and surgery) in the upper extremities of patients diagnosed with an inherited neuropathy. All patients enrolled in the Rare Diseases Clinical Research Network (RDCRN) Inherited Neuropathies Consortium (INC) Contact Registry who have marked one of the following disorders: CMT1A, CMT1B, CMT2A, CMT4, CMTX, other known CMT peripheral neuropathy, other unknown CMT peripheral neuropathy, or Hereditary Neuropathy with liability to Pressure Palsies (HNPP), will be invited via email to participate in this online study.

Conditions

  • Carpal Tunnel Syndrome
  • Charcot-Marie-Tooth Disease
  • Inherited Peripheral Neuropathy

Interventions

OTHER

Web-based survey

This study protocol consists of one anonymous survey. Each participant can complete only one survey. The survey will take approximately 25 minutes to complete. The survey is designed to identify items that best reflect the symptom severity and functional status in patients with CTS and CMT. A unique link to the survey will be included in an email invitation distributed to all adult CMT or HNPP patients self-registered in the RDCRN INC Contact Registry. Upon clicking the link, the participant will be directed to the IRB-approved online consent form. Upon providing consent, the participant will be directed to the online survey.

Sponsors & Collaborators

  • National Institute of Neurological Disorders and Stroke (NINDS)

    collaborator NIH

  • University of Rochester

    collaborator OTHER

  • University of Iowa

    collaborator OTHER

  • University of South Florida

    lead OTHER

Principal Investigators

  • David Herrmann, MBBCh · University of Rochester

  • Michael Shy, MD · University of Iowa

  • Callyn A Kirk, MSPH · USF Health Informatics Institute

  • Francis Panosyan, MD, PhD · University of Rochester

Eligibility

Min Age
18 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2016-06-30
Primary Completion
2016-11-19
Completion
2016-11-19

Countries

  • United States

Study Locations

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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 NCT02788734 on ClinicalTrials.gov