pATIENT-DRIVEN DATA FOR mULTIPLE SYSTEM ATROPHY
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Multiple System Atrophy (MSA) is a degenerative, progressive, neurological disease so named because its signs and symptoms affect multiple systems of the body. There is no effective treatment and no cure; people typically live about seven to nine years after MSA symptoms first appear. Diagnosis of Multiple System Atrophy (MSA) is challenging because there is no test that can make or confirm the diagnosis. Diagnosis is done through a process of exclusion and symptom tracking. As a result, some people are never properly diagnosed, although doctors are becoming increasingly aware of the disease.
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dataMSA Worldwide Reach
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In late March 2014, I launched dataMSA in recognition of MSA Awareness Month (March). For five full years, the surveys were open to all who may have been affected by the disease – patients, caregivers, and loved ones speaking for those lost to MSA. all respondents remain confidential.
In October 2018, the dataMSA Surveys for Multiple System Atrophy were presented at the International Congress of Parkinson’s Disease and Movement Disorders® in Hong Kong by Dr. Zoltan Mari, Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas and Dr. Abhimanyu Mahajan, Movement Disorders Fellow at University of Cincinnati. Of the 1800+ abstracts presented at the Congress our data was in the top 5 of Most Viewed. After the Congress, The dataMSA abstract was presented in the Movement Disorders Journal, online edition.
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In November 2023, the patient-driven data from the dataMSA Surveys for Multiple System Atrophy were presented at the Annual American Autonomic Society Annual Meeting in San Juan, Puerto Rico. Dr. Wolfgang Singer and Dr. Negin Badihian (Mayo Clinic, Rochester MN) presented their findings and recommendations after thorough analysis of the data. Dr. Badihian received the Don Summers Memorial MSA Travel Fellowship Award for this project.
In March 2025, the DataMSA patient-driven data and research was Presented by Dr. Wolfgang Singer (Mayo Clinic MN) at the International MSA Conference in Boston, MA
With deep gratitude to all who participated, many of whom are no longer with us
Bill Sydnor MSA patient, dataMSA creator
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