Patient Surveys

Mast Cell Activation Syndrome Patient Survey: UPDATE

Jul 16, 2019

Mast Cell Activation Syndrome (MCAS) Patient Survey This survey was open from August 17 – 25, 2018. (THIS SURVEY IS CLOSED) UPDATE-7/16/19 Our MCAS Survey team was excited to have a new poster on the survey data accepted for presentation during the American Initiative in Mast Cell Diseases (AIM) Inaugural Investigator Meeting in May 2019 […]

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The Mastocytosis Society, Inc. 2010 Survey on Mast Cell Disorders UPDATE

Aug 23, 2018

The Mastocytosis Society, Inc. (TMS) is happy to announce the publication of a second report of results from our 2010 Mast Cell Disorder Patient Survey: Russell N, Jennings S, Jennings B, Slee V, Sterling L, Castells M, et al. The Mastocytosis Society Survey on Mast Cell Disorders: Part 2-Patient Clinical Experiences and Beyond. J Allergy […]

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AWaRDS Study: Adults with Rare Disorders Support

Apr 03, 2017

Preliminary AWaRDS Results: Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017;12(1):177. BACKGROUND: In partnership with the National Organization for Rare Disorders, this will be the first large-scale study about the information and psychosocial support needs of people living with rare disorders. The purpose of this research study is to assess these needs, […]

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Mast Cell Disorder Patient Survey: March 23 – April 3, 2017 (Survey is Now Closed)

Apr 02, 2017

Perceptions of Patients with Mast Cell Disorders (Mastocytosis and Mast Cell Activation Syndrome) and the Physicians Who Care for Them In collaboration with Georgetown University’s Biomedical Graduate School, The Mastocytosis Society (TMS) invited participation in a research study titled “Perceptions of Patients with Mast Cell Disorders (Mastocytosis and Mast Cell Activation Syndrome) and the Physicians […]

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