TMS Research Committee Activities

Jun 01, 2017

Below is a description of updates and progress made by The Mastocytosis Society (TMS) Research Committee. Major activities and initiatives are noted, but for a full list of activities in which the committee is involved, please see our Join the Research Committee section of this website.

2017 American Academy of Allergy Asthma and Immunology (AAAAI) Annual Meeting

Drs. Finnerty and Jennings, along with Valerie Slee, RN, BSN, TMS Chair, joined other members of the TMS team at the 2017 AAAAI conference in Atlanta, GA, and attended a variety of medical and scientific presentations. They also attended the AAAAI Mast Cell Disorders Committee and Lay Organization meetings. TMS also hosted a Mast Cell Disorders Challenges meeting (see below for more details).

2016 American Society of Hematology (ASH) Annual Meeting

Dr. Jennings attended the December 2016 ASH Annual Meeting in San Diego, CA. TMS also hosted a Mast Cell Disorders Challenges meeting (see below for more details).

Mast Cell Disorder Challenges Meetings/US Network Development

In order to encourage productive discussions between mast cell disorder specialists, drug and biotechnology companies and our patient organization, TMS has hosted focus group sessions during the annual meetings of two medical specialist societies (2014/2015/2016 ASH and 2015/2016/2017 AAAAI), as well as prior to the 2015 ECNM annual meeting in Munich, Germany. These sessions were geared toward identifying challenges related to mast cell disorder treatment and involved efforts to brainstorm solutions for our primary challenges. Drs. Russell, Finnerty and Jennings, Valerie Slee, RN, BSN, and Mishele Cunningham, RN, BSN, PHN, have participated in past meetings as representatives of TMS.  TMS has maintained a list of challenges and possible actions for addressing them, based on meeting discussions, and is working to help create a US Network for Mast Cell Disorders as an initial step. Cem Akin, MD, PhD, and Jason Gotlib, MD, have agreed to lead the development of the network and the AAAAI Mast Cell Disorder Committee, chaired by Melody Carter, MD, for 2015 and 2016, and by Catherine Weiler, MD, PhD, for 2017, has also agreed to play a role in this initiative.

TMS Support of Mast Cell Disorder Research Surveys and Drug Development Companies

TMS has been working with researchers to make our mast cell disorder community aware of patient surveys that are related to our disease set. In addition, we have been working with drug development companies to help them connect with our patient population, for those patients who might be interested in becoming involved in the drug development process.  Our community can provide valuable information to these companies, by sharing our experiences and allowing industry representatives to better understand what patients in our community have to deal with on a daily basis.

2010 TMS Patient Survey Update

The second set of results of the TMS 2010 online survey of patients with mast cell disorders, Clinical Experiences, Co-Morbidities, Diets, Families and Opinions, are currently being prepared for submission to a peer-reviewed scientific journal.* A poster of these results was presented during the 2015 AAAAI Annual Meeting (available at

ICD-10-CM Codes for Mast Cell Activation Syndromes (MCAS) and Mastocytosis

In 2013-14, TMS Research Committee members worked with the Mast Cell Disorders Committee of the AAAAI (including Drs. Arnold Kirshenbaum, Joseph Butterfield, Cem Akin, Mariana Castells and Catherine Weiler) to create proposals for new medical diagnostic (ICD-10-CM) codes for MCAS and revised codes for mastocytosis.  These proposals were submitted jointly by TMS and the AAAAI to the Centers for Disease Control and Prevention (CDC) and were presented during the CDC Coordination and Maintenance Committee Meetings held March 19-20, 2014 (MCAS) and September 23-24, 2014 (mastocytosis).  Changes to the ICD-10-CM codes related to MCAS became effective in October 2016. Currently, ICD-10-CM codes for mastocytosis remain unchanged.

TMS Research Committee Co-Chair Steps Down

After 8 years of dedicated service to the mast cell disorder community, Nancy Russell, DrPH, stepped down as Co-Chair of the Research Committee in January 2017. We will miss her greatly and truly appreciate her offer to continue to serve as an advisor to the committee, on an as needed basis.

Additional Research Activities

  • Our committee collaborates with other TMS committees and our Medical Advisory Board on the creation of updated educational materials for TMS.

*First set of survey results has been previously published:

  1. Jennings S, Russell N, Jennings B, Slee V, Sterling L, Castells M, et al. The Mastocytosis Society Survey on Mast Cell Disorders: Patient Experiences and Perceptions. J Allergy Clin Immunol Pract. 2014;2(1):70-6.
  2. TMS Chronicles (Winter 2014)

June 2017