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.
The Mast Cell Disease Society, Inc. 2020 Needs Assessment Survey
URGENT!: Share Your Mast Cell Disease-Related Needs and Concerns!
TMS has launched The TMS 2020 Needs Assessment Survey in collaboration with researchers from Middle Tennessee State University. Responses to this IRB approved survey will be anonymous and it is vital that our whole mast cell disease community participates!
Why we are conducting this NEW survey:
- TMS has been invited by the European Competence Network on Mastocytosis (ECNM) to present (virtually) the Top 10 Needs of patients with Mastocytosis AND the Top 10 Needs of patients with Mast Cell Activation Syndrome (MCAS) (two separate lists) in our Mast Cell Disease community at the ECNM Annual Meeting in Vienna, Austria, at the end of August. Cem Akin, MD, PhD, University of Michigan, is serving as our advisor on this aspect of the project. WE WANT TO MAKE SURE YOUR VOICE IS HEARD! Take this survey by 11 pm (EDT) on August 17, 2020 to have your responses incorporated into these ECNM presentations. If you take the survey after this time, while your data will not be included in TMS presentations at the ECNM meeting, it will still be incorporated into reports of survey data and future research.
- This survey is also a key component of a larger initiative by TMS to identify and share the needs, experiences, and perceptions of people of all ages with a mast cell disease, including mastocytosis, MCAS and hereditary alpha tryptasemia (HaT).
You can take this survey if:
- You have been diagnosed with a mast cell disease (any form of mastocytosis, MCAS or HaT)
- Your physician suspects you have one of these diseases, you are being evaluated for or you are seeking an evaluation for one of these diseases
- You are a caregiver of a minor who has one of these diseases
- You are a caregiver of someone with one of these diseases who is unable to take the survey for themselves
The Mastocytosis Society, Inc. 2020 Patient Survey to Assess Impact of COVID-19 in Patients with Mast Cell Disease
This survey will remain open for the foreseeable future
You are invited to participate in a survey being conducted by Middle Tennessee State University (MTSU) researchers, in collaboration with The Mastocytosis Society, Inc. (TMS), designed to assess the impact of COVID-19 in patients with Mast Cell Disease. Data obtained from this survey will be used for discussion, investigation, presentation, and publications in medical journals to share knowledge gained about managing patients affected by both COVID-19 and pre-existing Mast Cell Disease.
Adult patients and caregivers of adult and pediatric patients (under age 18) who have been diagnosed with Mast Cell Disease, including Mastocytosis, Mast Cell Activation Syndrome (MCAS), and Hereditary Alpha Tryptasemia (HaT), by any physician or clinic, may take this survey, regardless of whether or not there was any known exposure to COVID-19, whether or not they have had symptoms of COVID-19, and regardless of COVID-19 test results or COVID-19 diagnosis. (This expanded survey eligibility will allow researchers to better assess the impact of COVID-19 on our whole Mast Cell Disease community.) TMS encourages ALL Mast Cell Disease patients/their caregivers to take the survey.
Mast Cell Activation Syndrome (MCAS) Patient Survey
This survey was conducted August 17th – 25th, 2018, and is now CLOSED.
Thank you to everyone who took the time to complete this survey!
The Mastocytosis Society, Inc. (TMS) invited anyone who had been diagnosed with Mast Cell Activation Syndrome (MCAS) by a physician to take part in this survey, the purpose of which was to advance research into the experiences and perceptions of patients with MCAS. Preliminary data obtained from this survey was used for a TMS presentation and group discussion purposes during a closed-session MCAS meeting at the National Institutes of Health. The meeting was attended by mast cell disease specialists who came together to discuss current critical issues for patients and families affected by MCAS. In February 2019, data from the MCAS Patient Survey was presented as a poster at the American Academy of Allergy, Asthma and Immunology (AAAAI) Annual Meeting. For more details and survey updates as they become available, please click below.
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 2010 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 in 2010, 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.