THE MASTOCYTOSIS SOCIETY SURVEY ON MAST CELL DISORDERS: Part 2-Clinical Experiences, Co-Morbidities, Diet, Families and Opinions
Rationale: Mast cell diseases such as mastocytosis and mast cell activation syndromes involve abnormal proliferation or activation of these cells leading to many potentially debilitating symptoms. In order to determine the characteristics and experiences of people known or suspected to have a mast cell disorder, The Mastocytosis Society (TMS), a U.S. based patient advocacy, research and education organization, conducted a survey of patients.
Methods: This web-based survey was publicized through speciality clinics and the Society’s newsletter, Web site and online blogs. Both online and paper copies of the questionnaire were provided together with required statements of consent.
Results: The first set of results from this survey of 420 respondents has been previously published; the second set is now presented. These results include source(s) of diagnosis, clinical and laboratory tests performed, co-morbid conditions, dietary practices, possible familial occurrence of mast cell diseases, and perceptions concerning mast cell related medical care in the United States.
Conclusions: These patient survey results are provided to assist medical professionals in defining clinical approaches and research goals and to give patients with mast cell disorders the opportunity to review the experiences of similar patients.
Methods: This web-based survey was publicized through speciality clinics and the Society’s newsletter, Web site and online blogs. Both online and paper copies of the questionnaire were provided together with required statements of consent.
Results: The first set of results from this survey of 420 respondents has been previously published; the second set is now presented. These results include source(s) of diagnosis, clinical and laboratory tests performed, co-morbid conditions, dietary practices, possible familial occurrence of mast cell diseases, and perceptions concerning mast cell related medical care in the United States.
Conclusions: These patient survey results are provided to assist medical professionals in defining clinical approaches and research goals and to give patients with mast cell disorders the opportunity to review the experiences of similar patients.
