MSU Myositis Patient-Centered Research
Our mission is to improve the lives of Myositis patients everywhere. We do this by keeping the patient community front and center in every collaboration with industry, corporate partners, academia, and other organizations, to ensure the patient and care partner’s voices are heard.
We will also provide empowering opportunities for all who are impacted by myositis to be involved in making a difference. Patients are the experts in their disease and their contribution to research should be recognized. In our collaborations, where appropriate, we will ensure patients are fairly compensated for sharing their expertise.
Myositis Support and Understanding and AllStripes partnerships
We are excited to partner with the medical data science company AllStripes on two myositis conditions to create a research database that will power new research studies. We partnered with AllStripes on the Inclusion Body Myositis program in 2019, and now, on the launch of the Dermatomyositis program.
To move this research forward, we’re looking for families/patients willing to contribute their medical records to make this effort as strong as possible. All data shared with researchers is de-identified, or anonymized, meaning no identifying information like name or phone number is shared.
Meet Dr. Salman Bhai
“There is no degree that can give you the lived experiences of an illness or the collective knowledge of an online community.” Dr. Salman Bhai, MSU Medical Advisor
Get to know Dr. Bhai in the first episode of the Managing Your Care Starts with You series where he discusses communicating with our doctors.
Meet the Patient-Centered Research Team
Lynn Wilson, VP, Director Patient-Centered Research
Manuel Lubinus, Patient-Centered Research Advisor
Salman Bhai, MD, Neuromuscular, MSU Medical Advisor
Your Data & Experiences Drive Research
More information on the patient-centered work we are doing is coming soon!
Stay tuned for an important update regarding the MSU Pain Survey!