Clinical Procedures to Support Research in ALS

  • STATUS
    Recruiting
  • End date
    Jun 29, 2024
  • participants needed
    1200
  • sponsor
    University of Miami
Updated on 29 October 2021
atrophy
primary lateral sclerosis
progressive muscular atrophy
amyotrophic lateral sclerosis

Summary

The purpose of the Clinical Procedures To Support Research (CAPTURE) study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders.

Description

The study will consent patients with ALS or related disorders that are receiving care at a clinical center in the CReATe consortium that uses Epic as its electronic health record (EHR) system. The study aims to systematically gather a clinical dataset through the EHR using a standardized approach to characterize the natural history of ALS and related diseases.

Details
Condition Spinal Muscular Atrophy, Myelopathy, Amyotrophic Lateral Sclerosis, Motor Neuron Disease, Amyotrophic Lateral Sclerosis (ALS), Spinal Cord Disorders, ALS-Frontotemporal Dementia, ALS-Frontotemporal Dementia, ALS-Frontotemporal Dementia, ALS-Frontotemporal Dementia, ALS-Frontotemporal Dementia, ALS-Frontotemporal Dementia, ALS-Frontotemporal Dementia, ALS-Frontotemporal Dementia, primary lateral sclerosis, lateral sclerosis, progressive muscular atrophy, lou gehrig's disease, ALS-Frontotemporal Dementia, ALS-Frontotemporal Dementia, ALS-Frontotemporal Dementia, ALS-Frontotemporal Dementia, ALS-Frontotemporal Dementia
Clinical Study IdentifierNCT03489278
SponsorUniversity of Miami
Last Modified on29 October 2021

Eligibility

Yes No Not Sure

Inclusion Criteria

Diagnosis of ALS or a related disorder (e.g. primary lateral sclerosis, progressive muscular atrophy)
Receiving care at a clinical center that uses Epic as its EHR
Able and willing to provide informed consent (or informed consent obtainable from a designated proxy)

Exclusion Criteria

Inability to understand English and/or Spanish
Clear my responses

How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer to help accelerate the development of new treatments and to get notified about similar trials.

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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

Learn more

If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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