Welcome to MSU Patient-Centered Research

We believe in the patient-centered research approach – putting the patient at the center of any collaboration with industry, academia, and government agencies to improve the quality of life of ALL affected by myositis. Learn more about the research we are involved in, the impact it can have, and how you can get involved.

MSU Research Philosophy

MSU Research Philosophy

  • Patients are the experts in their disease and their data and experiences drive research
  • We keep the patient front and center in every collaboration with industry, corporate partners, academia, and other organizations
  • Where appropriate, patients will be fairly compensated for sharing their experiences

We will be intentional in our partnerships and research funding:

  • Amplifies the voice of our diverse patient population
  • Enables MSU to influence the direction of research efforts
  • Provides a clear line of sight to impact on the myositis community

MSU Research Approach

MSU will center research efforts on the everyday improvement of patient quality of life (QoL)

Prioritizing patient-centered research initiatives that would benefit the quality of life of the myositis patient, among those:

  • Crowdsourcing of patients needs/wants by myositis type to capture the voice of the patient (VoP)
  • Burden of care research that addresses gaps in myositis care management

Providing research grants through MSU or affiliate partners for studies that impact near term functional diagnostic and treatment improvements

  • Novel clinical initiatives to prolong function in myositis patients
  • International MSA standardization for diagnosis & treatment of myositis

Partnering with academia, industry, and government agencies to understand disease evolution and subtype response to advance research in drug treatment and improved clinical trial design

  • Collaboration with AllStripes on their DM and IBM research programs
  • FDA listening session on Adult Dermatomyositis
MSU Research Approach

On the Road with MSU Research

To say this has been an eventful year so far for our Research Team is an understatement – published in Rheumatology, hosted an FDA Listening session on Adult Dermatomyositis – but, wait, there is more! We are going international!

We will be attending the Global Conference on Myositis in Prague where MSU will be represented in 2 scientific posters and presenting our own patient organization poster:

  • Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies: Click to view poster
  • Systematic review and patient perceptions of tendon transfers in inclusion body myositis to improve hand function: Click to view poster

We are looking forward to meeting new friends, seeing old friends, and connecting with dedicated Myositis clinicians and researchers from around the world.  We are on this journey together – working to find better treatments to ease the burden of our debilitating disease.

You are not alone. Your voice is being heard.

Summary FDA Listening Session for Adult Dermatomyositis

Summary of FDA Listening Session on Adult Dermatomyositis

MSU hosted our first-ever FDA Listening Session on Adult Dermatomyositis on April 26, 2022. This was an opportunity to facilitate the sharing of the patient perspective with FDA staff from 12 different offices and departments.

This patient-focused session was centered around the unique stories of dermatomyositis patients and caregivers. Our intent was to give the FDA an appreciation of the diversity of disease manifestations while highlighting the lack of effective treatments and underscoring the need for improved and accessible clinical trial designs.

View the PDF Summary here

We Are Published!

The MSU pain article: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies” has been published in Rheumatology and MSU is proud to make the paper available to you at no cost.

It may have taken three years, but we won’t rest until the pain in myositis becomes better recognized and treated and is listed as one of the top symptoms on surveys and resource sites, not something for the “other” box.

Access the paper here

Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies
Pain Presentation at Annual Carrell-Krusen Neuromuscular Symposium

Pain Presentation at 44th Annual Carrell-Krusen Neuromuscular Symposium

MSU is excited to announce that our study “Pain profile and opioid medication use in myositis” will be presented at the upcoming 44th Annual Carrell-Krusen Neuromuscular Symposium next week!  This virtual symposium is a clinical education experience for members of multidisciplinary teams who care for patients with rare neuromuscular diseases and is hosted by UT Southwestern Medical Center.  Many of the top myositis specialists will be in attendance. We can’t think of a more perfect place to begin to tell the story of pain in myositis. Read in full here.

Your Data & Experiences Drive Research

For more information or to contact the MSU Research Team, email Research@Understandingmyositis.org. 

Stay tuned for an important update regarding the MSU Pain Survey!

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