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Clinical Procedures to Support Research in ALS

Namita Goyal


A Study On:

  • Amyotrophic Lateral Sclerosis (ALS)
  • Brain - Neurologic/ Psychologic

Status:

  • Open

Eligibility

Amyotrophic Lateral Sclerosis
ALS-Frontotemporal Dementia
Primary Lateral Sclerosis
Progressive Muscular Atrophy
18 Years and older (Adult, Older Adult)

Official Title

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

Details

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.


Eligibility

You can join if...

Inclusion Criteria:

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

Exclusion Criteria:

  1. Inability to understand English and/or Spanish

Get in touch with our study team