Mast Cell Activation Syndrome Patient Survey: UPDATE

Jul 16, 2019

Mast Cell Activation Syndrome (MCAS) Patient Survey

This survey was open from August 17 – 25, 2018.

(THIS SURVEY IS CLOSED)

UPDATE-7/16/19

Our MCAS Survey team was excited to have a new poster on the survey data accepted for presentation during the American Initiative in Mast Cell Diseases (AIM) Inaugural Investigator Meeting in May 2019 at Stanford University. Results were presented on data broken down into different diagnosis groups: those who reported only being diagnosed with MCAS; with MCAS + Postural Orthostatic Tachycardia Syndrome/Dysautonomia (POTS/D); with MCAS + Ehlers-Danlos Syndrome (EDS)/related connective tissue disorder (rCTD); or with MCAS + POTS/D + EDS/rCTD. Data on those reporting a diagnosis of mastocytosis or hereditary alpha tryptasemia (HAT) were also presented.

UPDATE-3/21/19

The Mastocytosis Society MCAS Survey team presented a poster on the survey data during the 2019 American Academy of Allergy, Asthma and Immunology (AAAAI) Annual Meeting in San Francisco, CA (February 22-25). The poster was presented on Monday, February 25th, and we had a good flow of meeting attendees interested in the results.

The results of this 2018 MCAS survey, including the data shown on this poster, may be of interest to anyone interested in any form of mast cell disease.

Please click HERE to view the poster that was presented at the 2019 AAAAI Annual Meeting.

UPDATE-9/13/18

Wow, what a wonderful response! Thank you to everyone who took the time to complete this survey. We received lots of data to help with our presentation at The National Institutes of Health (NIH) and look forward to sharing the results of the survey with the public through a future MCAS Patient Survey article. The presentation went well and meeting attendees were able to learn from the experiences and perceptions of patients with MCAS. The wonderful response to the survey allowed The Mastocytosis Society, Inc. (TMS) to present a very powerful, collective MCAS patient voice!

BACKGROUND

The National Institutes of Health (NIH) hosted a workshop on MCAS on September 7, 2018. Esteemed physicians, a number of whom were part of the original MCAS proposed consensus committee, as well as others, were invited to an intense day of back-to-back presentations and panel discussions/work sessions. TMS was invited to participate in this meeting by presenting on Patient Perceptions of MCAS, and participating in breakout workgroups. TMS sent four members of our Research and Patient Care Coordination Committees to participate in this meeting and Susan Jennings, PhD, TMS Research Committee Chair, presented the MCAS Patient Survey results for TMS.

In order to include current data in the presentation, Susan Jennings, PhD, Valerie Slee, RN, BSN, Jan Hempstead, RN, Mariana Castells, MD, PhD, Cem Akin, MD, PhD, Andrew Slee, PhD, and Angela Bowman, PhD, developed a survey on MCAS. All patients with a diagnosis of MCAS made by a physician were encouraged to take and submit this anonymous survey whether or not they were members of TMS, and even if they had not fulfilled the criteria of a rise in mediators. In the situation where a patient may have been given more than one mast cell disease diagnosis, as long as one diagnosis was MCAS or hereditary alpha tryptasemia, they were still able to take the survey. The survey was only open for one week in order to give us time, with the help of Dr. Bowman, to analyze the data and create the presentation for September 7th. We will continue to mine critical data from the survey, with the intent to publish the findings.

TMS encouraged all patients affected by MCAS and/or hereditary alpha tryptasemia (HAT) to contribute to updated knowledge about their disease by taking the survey. This survey was open to children, teens and adults affected by MCAS, with parents/guardians either answering for young children or assisting teens with completing the survey. Some critical issues we hope to assess are what percentage of people are living with a more severe form of MCAS than has been previously described in the literature, are severely food-restricted, and are experiencing difficulty accessing appropriate care. TMS also encouraged people to share information about the survey with other mast cell disease forums.

TMS appreciates the collaborative effort and expertise of the following individuals in the development of this survey:

Mariana Castells, MD, PhD (Department of Medicine, Harvard University, Boston, MA)

Cem Akin, MD, PhD (Department of Internal Medicine, University of Michigan, Ann Arbor, MI)

Angela Bowman, PhD (Department of Health and Human Performance, Middle Tennessee State University, Murfreesboro, TN)

 

With warm regards,

Valerie M. Slee, RN, BSN, Chair

chairman@tmsforacure.org

Susan Jennings, PhD, Research Chair

research@tmsforacure.org

Jan Hempstead, RN, Patient Care Coordination Chair

nurses@tmsforacure.org

The Mastocytosis Society, Inc.

www.tmsforacure.org