Clinical Procedures to Support Research in ALS

Launched by UNIVERSITY OF MIAMI · Apr 4, 2018

Keywords

ClinConnect Summary

The CAPTURE study is a research project aimed at understanding more about amyotrophic lateral sclerosis (ALS) and similar conditions. By looking at information collected from patients' medical records, researchers hope to gain insights that could help improve care and treatment for ALS and related disorders like primary lateral sclerosis and progressive muscular atrophy. This study is currently recruiting participants, and anyone aged 65 to 74 who has been diagnosed with ALS or a related disorder and is receiving care at a specific clinical center may be eligible to join.

To participate, individuals must be able and willing to give their consent, or a designated person can provide consent for them. However, those who cannot understand English or Spanish will not be able to participate. If you join the study, you can expect your medical information to be used in a way that helps researchers learn more about these diseases, potentially benefiting future patients. It's an opportunity to contribute to important research while receiving care at a participating center.

Gender

ALL

Eligibility criteria

• 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