CI

At a glance

ClinicalIndex Comparison Record
N/ACompleted· 410 enrolled
Drug / intervention
Web-based Surveyother
Likely dose
Not stated in record
Structured eligibility isn't available for this trial yet — see the full criteria in the Eligibility tab below.

Standardized by ClinicalIndex from the ClinicalTrials.gov record · verify against the source.

Search/NCT02852278
NCT02852278N/ACompleted
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A Patient Centric Motor Neuron Disease Activities of Daily Living Scale

University of South Florida·observational·Posted Aug 2, 2016·Updated Oct 16, 2019

In Brief

An observational study evaluating Web-based Survey for Amyotrophic Lateral Sclerosis and 3 related conditions. Completed, enrolled 410 participants.

Detailed Summary

The purpose of this study is to learn about rates of patient-reported disease progression in patients with motor neuron diseases (amyotrophic lateral sclerosis, progressive muscular atrophy, primary lateral sclerosis, hereditary spastic paraplegia) outside the clinical setting, and the patient-reported clinical characteristics that influence this rate of progression. All patients enrolled in CReATe Connect, a Rare Diseases Clinical Research Network (RDCRN) Contact Registry, will be invited via email to participate in this study.

Study Details

Study Typeobservational
Allocation--
Masking--
Primary Purpose--
ConditionsAmyotrophic Lateral Sclerosis, Progressive Muscular Atrophy, Primary Lateral Sclerosis, Hereditary Spastic Paraplegia
Countries--
CollaboratorsNational Institutes of Health (NIH), University of Kansas, University of Miami

Timeline

N/ACompletedFinished
2017201820192020202120222023202420252026
First PostedAug 2, 2016
Enrollment StartDec 1, 2016
Primary CompletionSep 13, 2019
TodayJul 2, 2026
Enrollment to primary: 2.8 yearsPosted 9.9 years ago

Interventions

Web-based Surveyother

This is a prospective 12-month study of patients with motor neuron disease enrolled in CReATe Connect, an RDCRN Contact Registry.