Embedding clinical tools into electronic records for myasthenia gravis care
Official title: Project 1 Clinical Procedures to Support Research in Myasthenia Gravis (CAPTURE_MG)
Funded at George Washington University · NIH-11171995 · Data updated 2026-11-12
This project adds a simple toolkit into doctors' electronic health records to collect consistent clinical information about people with myasthenia gravis during routine care.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | George Washington University NIH-funded |
| Lab location | 1 site (Washington, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2030 |
| Funding year | 2025 |
| Award (this year) | $467,998 |
| NIH project number | 2U54NS115054-06 |
| Project ID | NIH-11171995 on NIH RePORTER |
Who could benefit from this research
✓Could help
People living with myasthenia gravis who receive care at one of the participating Epic-equipped academic centers and agree to have their clinical data included are ideal candidates.
✕Less likely to help
Patients who do not receive care at participating centers, opt out of data sharing, or who do not have myasthenia gravis are unlikely to benefit directly from this project.
What this research studies
If you get care at a participating center, clinicians will use a new MG-Toolkit built into the Epic medical record to record symptoms, treatments, and side effects in a consistent way. The toolkit uses SmartForms so visits stay efficient and low-burden for patients and clinicians. Collected information from multiple academic centers will be combined into a de-identified central database to track real-world treatment responses and adverse events. That pooled data will support comparisons between therapies, phase 4 studies, and future biomarker research.
Why it matters
Potential benefit: If successful, this could help identify which treatments work best for different patients and improve monitoring of side effects in routine care.
How similar studies have gone: This approach is modeled on the successful ALS-Toolkit from the CReATe Consortium, which demonstrated feasibility of EHR-integrated standardized data capture, while its specific use in MG is newer.
Where this research is happening
-
George Washington University
Washington, United States Active
Researchers
- Principal investigator: Kaminski, Henry J — George Washington University
- Study coordinator: Kaminski, Henry J
Related research
Other NIH-funded projects on the same topics.
-
Understanding how autoimmunity causes myasthenia gravis
This project looks at why the immune system attacks the nerve-muscle connection in myasthenia gravis and how different patient groups are affected.
-
Biological age in myasthenia gravis: guiding who responds to treatment
A patient-friendly look at how a person’s biological age, not just their calendar age, might predict how MG patients respond to treatment and how treatments could even reduce biological aging.
-
CapTURE-MG: A patient-friendly MG data toolkit in a common EHR
A multi-site effort to use a streamlined MG toolkit inside the Epic EHR to collect consistent, real-world information about myasthenia gravis from routine care.
-
Rare Disease Network for Myasthenia Gravis
A nationwide effort to improve diagnosis, monitoring, and trial readiness for people with myasthenia gravis through biomarker work and better care tools.
-
Understanding how autoimmune attacks cause myasthenia gravis
Researchers are studying how the immune system mistakenly targets the neuromuscular junction in myasthenia gravis to identify why the disease starts and how it progresses.
-
Mechanistically informed deep learning to study autoreactive B cells in Myasthenia Gravis
A study using advanced computer models to find hidden immune-cell signals in people with Myasthenia Gravis, including those who don’t yet show detectable antibodies.
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.