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

Jan 01, 2017

In 2017, The Mastocytosis Society, Inc. (TMS) anticipates submitting a second report of our Mast Cell Disorder Patient Survey results for publication. A poster summarizing these second results, The Mastocytosis Society Survey on Mast Cell Disorders: Part 2-Clinical Experiences, Co-Morbidities, Diet, Families and Opinions, was presented during the 2015 American Academy of Allergy, Asthma and Immunology Annual Meeting. TMS presented the first set of results from the survey in 2014 in the Journal of Allergy and Clinical Immunology: In Practice.1 The article and its online repository (containing additional data and the original survey questionnaire) are available free to the public through the journal’s website.

Background

In December of 2009, Cem Akin, MD, PhD, of Harvard Medical School and Brigham and Women’s Hospital contacted TMS about a unique opportunity for patients to provide input into the establishment and/or revision of the diagnostic criteria for mastocytosis and the disorders of mast cell activation. He asked TMS to create a survey, based on a series of questions originally provided by Peter Valent, MD, of the Medical University of Vienna. Patients in Europe were invited to do a similar survey based on the same questions.

A web-based survey was designed and implemented by TMS. Patients of all ages, or caregivers on the patients’ behalf, living in or outside the United States (U.S.), with cutaneous or systemic mastocytosis, mast cell activation syndrome or any other suspected mast cell disorder, were invited to complete the survey whether or not they were members of TMS. The survey was posted through the TMS website between April 15 and May 24, 2010.

Information collected on 420 survey respondents included demographics, diagnoses, symptoms, medications, comorbid conditions, clinical and laboratory tests, allergies, triggers of mast cell symptoms, dietary concerns, occurrence of mast cell disease in their families, its impact on their lives and their perceptions of mast cell related care in the United States.

The TMS Patient Survey provides an example of patients and specialists working together to learn from the experiences and perceptions of people coping with rare disorders. Survey results provide useful information for non-specialist clinicians who treat or collaborate in the treatment of these patients and for patients to review experiences of others with mast cell disorders.

  1. Jennings S, Russell N, Jennings B, Slee V, Sterling L, Castells M, et al. The Mastocytosis Society survey on mast cell disorders: patient experiences and perceptions. J Allergy Clin Immunol Pract. 2014 Jan-Feb;2(1):70-6.