Research Opportunity · In Partnership with UCSF
Living Well with Dermatomyositis: A Survey on Diet, Sleep & Integrative Health
Help shape the future of patient-centered research
One of the things we believe at Nori's Fight is that patients are experts too. You know what it feels like to live inside this disease; the fatigue, the searching, the small daily decisions that rarely show up in clinical notes. That knowledge matters. And now there's a meaningful way to put it to work.
Our friends at UCSF are conducting a research survey to better understand how people living with dermatomyositis approach diet, sleep, and integrative health practices. Their goal is to learn directly from our community and use what they find to guide future research and improve clinical care for all of us.
Who Can Participate
Adults 18+ with dermatomyositis or another myositis subtype
Time Commitment
Approximately
15–30 minutes
Conducted By
UCSF Research Team
Data Review Begins
End of July 2026
please complete soon
Important Notes:
-
Please complete the survey only once.
-
Please do not participate if you are enrolled in the UCSF Dermatomyositis Registry.
-
We encourage participants to complete the survey as soon as possible, as the investigators intend to conduct an initial review of the data by the end of July 2026.
Your voice matters
Research on rare diseases like MDA-5 and other forms of dermatomyositis moves slowly, in part because so few people share a diagnosis, and in part because the patient experience has not always been a main focus. Surveys like this one help change that. When researchers can see real patterns in how patients eat, sleep, and care for themselves, they can ask better questions, design better studies, and ultimately advocate for better care.
Every response is a data point. Every data point is a person. And together, we have the power to move this field forward.