What was your consortium's most significant achievement from the past year?
Henry Kaminski, MD, Principal Investigator, MGNet: We have established the MGToolKit in Epic to collect research-grade data in the context of routine clinic visits. We have also recruited the first subjects.
What did this achievement accomplish?
Dr. Kaminski: The MGToolKit demonstrates the ability to coordinate expert clinician feedback to develop standardized, in-clinic protocols for data collection. This required additional institutional agreements, IRB approval, and IT support.
How will this impact the rare disease community?
Dr. Kaminski: The ultimate goal is to proliferate this approach within the MGNet and beyond to all MG research centers in the country.
How will this advance the goals of your consortium and/or the RDCRN at large?
Dr. Kaminski: We will be able to produce the largest real-world natural history study in the history of myasthenia gravis research.