Clinical Procedures to Support Research in ALS (CAPTURE-ALS)

  • End date
    Jun 11, 2024
  • participants needed
  • sponsor
    University of Miami
Updated on 11 July 2022
primary lateral sclerosis
progressive muscular atrophy
amyotrophic lateral sclerosis


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.


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.

Condition Amyotrophic Lateral Sclerosis, ALS-Frontotemporal Dementia, Primary Lateral Sclerosis, Progressive Muscular Atrophy
Clinical Study IdentifierNCT03489278
SponsorUniversity of Miami
Last Modified on11 July 2022


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.

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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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