Summary:
A life science company sought to better understand patient experience with timely diagnosis and treatment of two rare diseases, neuromyelitis optica spectrum disorders (NMOSD) and generalized myasthenia gravis (gMG), particularly among underserved communities. They contracted Atlas Clarity to conduct a mixed methods study examining the time to diagnosis for both NMOSD and MG and what might facilitate greater access to specialists so that these patients can receive timely treatment, maintain adherence, and achieve persistence. Methods included patient surveys and interviews, as well as clinician interviews. This landmark work was guided by a multistakeholder Steering Committee comprised of a variety of clinician leaders, patient advocacy experts, patients themselves, and others.
This study’s findings resulted in:
1) a list of proposed solutions for addressing gaps in NMOSD or gMG care;
2) a PowerPoint presentation designed to inform strategies to shorten time to diagnosis and improve access to rare disease treatment;
3) a poster presented at American Academy of Neurology (AAN) Summer Conference 2024; and
4) a peer-reviewed article published in December 2025, titled “Patient journey in generalized myasthenia gravis in the United States: Barriers to timely diagnosis and proposed solutions.”
These products will inform broader policy and health system initiatives in the United States to improve access among communities of color to rare disease diagnosis and treatment.