Patient Survey Information and Updates
One important way our mast cell disorder community can help ensure advances in research and patient care is by participating in surveys related to these disorders and rare diseases in general. Below are some surveys that our community has participated in or can still take part in.
Mast Cell Activation Syndrome Patient Survey
The Mastocytosis Society, Inc. (TMS) invites anyone who has been diagnosed with Mast Cell Activation Syndrome (MCAS) by a physician to take part in this survey, the purpose of which is to advance research into the experiences and perceptions of patients with MCAS. Preliminary data obtained from this survey will be used for a TMS presentation and group discussion purposes during an upcoming closed-session MCAS meeting at the National Institutes of Health. The meeting will be attended by mast cell disease specialists who are coming together to discuss current critical issues for patients and families affected by MCAS. Please note, as this meeting is a work session, it is not open to the public.
Patients of all ages, in any country, who have been diagnosed with Mast Cell Activation Syndrome (MCAS) by any physician or clinic, may take this survey, with a parent/guardian assisting with responses or responding for minors with MCAS. In the situation where a patient may have been given more than one mast cell disease diagnosis, as long as one diagnosis is MCAS or hereditary alpha tryptasemia, they may still take this survey. Personal responses will remain anonymous, and only data on collective groups will be presented, discussed, or published.
Adults with Rare Disorders Support (AWaRDS) Study
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, from the perspectives of people with a variety of rare disorders, to find similarities and differences across disorders. To ensure that results reflect the diversity of the rare disease community, it is crucial that as many people living with a rare disease as possible take part.
The Stony Brook Chronic Illness Project-Patient Survey
This survey CLOSED May 14, 2018.
Scientists at Stony Brook University conducted one of the largest, most important research studies ever undertaken to understand people’s experiences with chronic illness. The knowledge gained from this study will help scientists and physicians improve care and develop effective treatments. This anonymous, online questionnaire welcomed participation by any adult with a rare or non-rare chronic illness.
MAST CELL DISORDER PATIENT SURVEY (Georgetown University)
This survey was conducted March 23rd – April 3rd, 2017, and is now CLOSED.
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 this research study. The purpose of the survey was to explore perceptions of patients with mastocytosis, cutaneous and systemic, and mast cell activation syndrome (MCAS) regarding priority health, social and other needs. A separate survey designed specifically for providers is intended to be conducted at a later date.
The Mastocytosis Society Survey on Mast Cell Disorders-UPDATE
This survey was conducted April 15th – May 24th, 2010, and is now CLOSED.
This web-based survey was designed and implemented by TMS, based on a series of questions originally provided by Peter Valent, MD, of the Medical University of Vienna. Cem Akin, MD, PhD, formerly of Harvard Medical School and Brigham and Women’s Hospital (currently at the University of Michigan), has served as the survey advisor. 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. The link below provides updates on publications and presentations of survey data.