PRISM — Neuromuscular Disease Observational Study
PRISM is a comprehensive observational study collecting real-world health data from individuals living with neuromuscular diseases — including SMA, ALS, muscular dystrophies, and more. By securely analyzing your medical records, this study helps researchers and clinicians better understand disease progression, treatment patterns, and outcomes across the neuromuscular disease community.
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 a neuromuscular disease
- Are any age (newborn through adult)
- Have access to a participating EHR system through your healthcare provider
- Are able and willing to provide informed consent (or parental consent for minors)
Conditions covered:
Spinal Muscular Atrophy (SMA), Amyotrophic Lateral Sclerosis (ALS), Duchenne Muscular Dystrophy (DMD), Becker Muscular Dystrophy (BMD), Limb-Girdle Muscular Dystrophies (LGMDs), Facioscapulohumeral Muscular Dystrophy (FSHD), Pompe Disease, and more
About this research study
PRISM uses Unite’s platform to securely collect and analyze both structured medical data (diagnoses, lab results, medications) and unstructured clinical notes from your health records. This dual approach helps researchers uncover insights that traditional studies miss — like treatment rationale documented in physician notes, biomarker trends, and real-world therapy outcomes. Your participation helps build a clearer picture of how neuromuscular diseases progress and respond to treatment.
Our Approach
PRISM uses a modular umbrella design — one master study that spans multiple neuromuscular conditions. This means your participation contributes to a broad research effort. The first active module focuses on Spinal Muscular Atrophy (SMA), with additional disease modules being added over time.
What We Study
We analyze biomarker trajectories, treatment patterns, disease progression, and real-world outcomes across approved therapies. For SMA, this includes treatments like nusinersen (Spinraza), onasemnogene (Zolgensma), and risdiplam (Evrysdi), along with emerging biomarkers like neurofilament light chain and motor function scores.
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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