The Mastocytosis Society, Inc, Hastings, Neb.
Division of Rheumatology, Immunology, and Allergy, Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, Mass.
J Allergy Clin Immunol Pract. 2014 Jan-Feb;2(1):70-6. doi: 10.1016/j.jaip.2013.09.004. Epub 2013 Dec 3.
Mast cell diseases include mastocytosis and mast cell activation syndromes, some of which have been shown to involve clonal defects in mast cells that result in abnormal cellular proliferation or activation. Numerous clinical studies of mastocytosis have been published, but no population-based comprehensive surveys of patients in the United States have been identified. Few mast cell disease specialty centers exist in the United States, and awareness of these mast cell disorders is limited among nonspecialists. Accordingly, information concerning the experiences of the overall estimated population of these patients has been lacking.
To identify the experiences and perceptions of patients with mastocytosis, mast cell activation syndromes, and related disorders, The Mastocytosis Society (TMS), a US based patient advocacy, research, and education organization, conducted a survey of its members and other people known or suspected to be part of this patient population.
A Web-based survey was publicized through clinics that treat these patients and through TMS's newsletter, Web site, and online blogs. Both online and paper copies of the questionnaire were provided, together with required statements of consent.
The first results are presented for 420 patients. These results include demographics, diagnoses, symptoms, allergies, provoking factors of mast cell symptoms, and disease impact.
Patients with mastocytosis and mast cell activation syndromes have provided clinical specialists, collaborators, and other patients with information to enable them to explore and deepen their understanding of the experiences and perceptions of people coping with these disorders.
肥大细胞疾病包括肥大细胞增多症和肥大细胞激活综合征，其中一些已被证明涉及肥大细胞的克隆缺陷，导致异常细胞增殖或激活。已经发表了许多关于肥大细胞增多症的临床研究，但尚未确定在美国进行基于人群的全面患者调查。美国只有少数几个肥大细胞疾病专业中心，而且非专家对这些肥大细胞疾病的认识有限。因此，关于这些患者总体估计人群的经验信息一直缺乏。
为了确定肥大细胞增多症、肥大细胞激活综合征和相关疾病患者的经历和看法，美国基于患者权益、研究和教育的组织肥大细胞学会（TMS）对其成员以及其他已知或疑似属于这一患者群体的人进行了调查。
通过治疗这些患者的诊所以及 TMS 的通讯、网站和在线博客，宣传基于网络的调查。提供了在线和纸质问卷副本，并附有必要的同意声明。
目前呈现了 420 名患者的初步结果。这些结果包括人口统计学、诊断、症状、过敏、肥大细胞症状的诱发因素以及疾病影响。
肥大细胞增多症和肥大细胞激活综合征患者为临床专家、合作者和其他患者提供了信息，使他们能够探索和深化对患有这些疾病的人群的经历和看法的理解。
