StudyALS Research Collaborative (ARC) Study
This observational study collects health information from people living with ALS to help researchers, healthcare professionals, and communities better understand how the disease progresses, how current treatments impact daily life, and how to improve future care for patients. No extra appointments, treatments, or procedures are required.
Participate from Home
No blood draws, procedures, or in-person visits
Securely share your EHR data to advance research within 5 minutes
You may be eligible if you:
- Have been diagnosed with or are suspected of having ALS (amyotrophic lateral sclerosis)
- Are 18 years of age or older
- Have access to a participating EHR system through your healthcare provider
- Are able and willing to provide informed consent
About this research study
This observational study collects health information from people living with ALS to help researchers, healthcare professionals, and communities better understand how the disease progresses, how treatments impact daily life, and how to improve future care for patients. By securely sharing your electronic health records, you contribute to a growing body of real-world evidence that can accelerate research and inform better treatment decisions.
Our Approach
In partnership with ALS TDI, this study uses Unite’s FHIR-based integrations to securely access your medical records, capturing real-world treatment data without requiring any additional visits or procedures. Advanced NLP technology extracts valuable insights from clinical notes that traditional research methods often miss.
ALS Clinical Therapy
This study tracks real-world outcomes across current ALS therapies, including riluzole, edaravone, tofersen, and emerging treatments. We analyze treatment patterns, medication tolerability, disease progression markers like ALSFRS-R scores, respiratory function, and quality-of-life measures.
Built around one rule: it’s your data.
You’re in Control
You choose which records to share, and who to share them with. Only you can grant and revoke access. Unite will never sell your data.
Hospital-grade security
Your data is protected by end-to-end encryption and stored on secure, regularly audited servers. Regular audits and access controls keep your information safe — applied to everything we do.
Always free, no exceptions
Accessing your records, connecting your providers, and participating in research is completely free. No premium tiers, no paywalls — ever.
Take control of your health story today
Your medical records should make your life easier, not harder. Unite brings them together— and makes them work for you.
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