Disability Severity Scale (DSI) and Hereditary Motor and Sensory Neuropathy Overall Disability Scale (HMSN-R-ODS)
Completed
Conditions studied: Charcot Marie Tooth Disease, Inherited Peripheral Neuropathy
In brief
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).
Key facts
- Study ID
- NCT02194010
- Run by
- University of Iowa
- People needed
- 563
- Starts
- 2014-04-01
- Expected to finish
- 2019-02-01
- Last updated by the study team
- 2019-02-07
Who can join
Age: 10 and older. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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
You may not qualify if…
- 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
Where it is running
- University of Iowa — Iowa City, Iowa, United States
- University of Rochester Medical Center — Rochester, New York, United States
- National Hospital of Neurology and Neurosurgery — London, United Kingdom
Full record on ClinicalTrials.gov
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