Status:
COMPLETED
Disability Severity Scale (DSI) and Hereditary Motor and Sensory Neuropathy Overall Disability Scale (HMSN-R-ODS)
Lead Sponsor:
University of Iowa
Collaborating Sponsors:
National Institute of Neurological Disorders and Stroke (NINDS)
Charcot-Marie-Tooth Association
Conditions:
Charcot Marie Tooth Disease
Inherited Peripheral Neuropathy
Eligibility:
All Genders
10+ years
Brief 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 inheri...
Detailed Description
Charcot Marie Tooth Disease (CMT) is a group of disorders that cause a peripheral neuropathy, impairing the long nerves that go to the feet and hands. Due to the problems with the peripheral nerves, p...
Eligibility Criteria
Inclusion
- individual has an inherited peripheral neuropathy or is suspected to have an inherited peripheral neuropathy
- individual is 10-99 years of age
- individual signs consent or assent form depending on age and requirements
- individual is participating in INC 6601 at one of the participating sites OR is a participant on the INC Patient Registry
Exclusion
- inability to provide informed consent
- outside of age range
- inability to complete questionnaire
- does not understand English
- is not participating in INC 6601 or on the INC Patient Registry
Key Trial Info
Start Date :
April 1 2014
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
February 1 2019
Estimated Enrollment :
563 Patients enrolled
Trial Details
Trial ID
NCT02194010
Start Date
April 1 2014
End Date
February 1 2019
Last Update
February 7 2019
Active Locations (3)
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1
University of Iowa
Iowa City, Iowa, United States, 52242
2
University of Rochester Medical Center
Rochester, New York, United States, 14627
3
National Hospital of Neurology and Neurosurgery
London, United Kingdom