Clinical Procedures to Support Research in ALS

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

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.

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