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A Patient Centric Motor Neuron Disease Activities of Daily Living Scale

NCT02852278 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 410

Last updated 2019-10-16

No results posted yet for this study

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.

Conditions

Interventions

OTHER

Web-based Survey

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

Sponsors & Collaborators

  • National Institutes of Health (NIH)

    collaborator NIH

  • University of Kansas

    collaborator OTHER

  • University of Miami

    collaborator OTHER

  • University of South Florida

    lead OTHER

Principal Investigators

  • Jeffrey Statland, MD · University of Kansas Medical Center

  • Michael Benatar, MD, PhD · University of Miami

  • Jeffery Krischer, PhD · University of South Florida, Data Management Coordinating Center

  • Callyn Kirk, MSPH · University of South Florida

Eligibility

Min Age
18 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2016-12-31
Primary Completion
2019-09-13
Completion
2019-09-13

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Entities

Diseases

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 NCT02852278 on ClinicalTrials.gov