Mission MSA announced the launch of the Multiple System Atrophy Shared Patient History, Experience, and Research Exchange (MSA-SPHERE), a decentralized longitudinal research platform designed to generate critical natural history data, strengthen clinical trial readiness, and support therapeutic development in multiple system atrophy (MSA). By enabling remote participation from individuals living with MSA and their care partners, MSA-SPHERE will establish a collaborative research resource to advance understanding of disease progression and patient-centered research outcomes.
CHICAGO, Aug. 18, 2026 /PRNewswire-PRWeb/ -- Today, Mission MSA announced the launch of the Multiple System Atrophy Shared Patient History, Experience, and Research Exchange (MSA-SPHERE), a patient- and care partner-centered research platform designed to characterize disease progression, strengthen clinical trial readiness, and establish a comprehensive real-world dataset to support natural history studies, therapeutic development, and patient-centered outcomes research in multiple system atrophy (MSA).
MSA is a rapidly progressive, fatal neurodegenerative disease affecting an estimated 15,000–50,000 people in the United States. Despite increasing interest in therapeutic development and a growing pipeline of investigational treatments, progress toward effective therapies remains limited by fragmented clinical information, incomplete characterization of disease trajectories, limited natural history data, and difficulties identifying and engaging well-characterized, trial-ready participants.
As therapeutic development in MSA advances, the field requires high-quality longitudinal data that can define patterns of disease trajectories, support meaningful outcome measure development, and improve the efficiency of clinical trial design.
MSA-SPHERE addresses these needs by establishing a decentralized observational research platform where individuals living with MSA and their care partners can contribute standardized information through remote participation. The platform captures several domains of disease burden, including symptom progression, autonomic dysfunction, functional status, quality of life, sleep, mood, fatigue, and other outcomes that are vital to understanding the natural history of MSA and informing future clinical studies.
"Patients and care partners have consistently expressed a desire to contribute to research, even when they are unable to participate in a clinical trial," said Jessie Iregui, Mission MSA Director of Research and Medical Education and Principal Investigator for MSA-SPHERE. "MSA-SPHERE provides an additional pathway for participation while ensuring that every patient's experiences contribute to a more comprehensive understanding of MSA and ultimately inform future therapeutic development."
MSA-SPHERE was developed with input from clinicians, researchers, patients, and care partners, incorporating validated clinical and patient-reported measures selected to ensure that the information collected is scientifically rigorous and aligned with meaningful aspects of the disease identified by those living with MSA.
"The launch of the MSA-SPHERE Platform marks a crucial step forward in ensuring that the daily experiences of those living with MSA directly shape the future of MSA research," said Joe Lindahl, CEO of Mission MSA. "By creating a unified space for vital data and clinical trial opportunities, we are empowering our community to take an active role in driving scientific breakthroughs and accelerating the path to a cure."
Additional information and active enrollment are now open at missionmsa.org/msa-sphere.
Researchers, healthcare providers, advocacy organizations, individuals living with MSA, and care partners interested in learning more about MSA-SPHERE or potential collaboration opportunities are encouraged to visit missionmsa.org/msa-sphere or contact Mission MSA.
Mission MSA is a 501(c)(3) nonprofit organization dedicated to improving the quality of life for those affected by multiple system atrophy. Through support, education, advocacy, and funding for research, Mission MSA strives to bring hope to the MSA community while working toward a future without the disease. For more information, visit missionmsa.org.
Media Contact
Jessie Iregui, MSc, Mission MSA, 1 8667374999, [email protected], https://missionmsa.org/
SOURCE Mission MSA
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