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.
- Amyotrophic lateral sclerosis (ALS)
- ALS-Frontotemporal dementia (ALS-FTD)
- Primary lateral sclerosis (PLS)
- Progressive muscular atrophy (PMA)
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.
About This Study
A total of approximately 1,200 people will take part in this study across the United States. Those participating in the study will only have one in-person study visit which will occur at the time of their regular clinic visit. Data will also be collected from each participant’s medical records on an ongoing basis.
If you join the CAPTURE study, you will be asked to:
- Tell us about yourself such as your date of birth, legal name at birth, gender, and place of birth.
- Allow us to collect information from your medical record.
- Optional: Provide blood for a DNA sample during a clinic visit. You can choose to let us collect information from you and your medical record, but choose not to give a blood sample for testing.
To be eligible to participate, you must:
- Have a diagnosis of ALS or a related disorder (e.g. primary lateral sclerosis, progressive muscular atrophy).
- Be receiving care at a clinical center that uses Epic as its EHR.
- Be able and willing to provide informed consent (or informed consent obtainable from a designated proxy).
You are not eligible to participate if:
- You cannot understand English and/or Spanish
How to Participate:
In order to participate in this study, please contact the study coordinator at one of the participating institutions by phone or by e-mail.