Aug 23, 2018
Below is a description of updates and progress on projects related to 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. Where applicable, click on titles for more information.
2018 American Academy of Allergy Asthma and Immunology (AAAAI) Annual Meeting
Drs. Finnerty and Jennings joined other members of the TMS team at the 2018 AAAAI conference in Orlando, FL. They attended a variety of medical and scientific presentations and the AAAAI Mast Cell Disorders Committee and Lay Organization meetings, and hosted a planning meeting for the leaders of the American Initiative in Mast Cell Diseases (AIM) who were attending the AAAAI meeting.
2017 American Society of Hematology (ASH) Annual Meeting
Dr. Jennings joined other members of the TMS team at the December 2017 ASH Annual Meeting in Atlanta, GA. TMS also hosted a Mast Cell Disorders Challenges meeting (see below for more details).
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 (2014/2015/2016/2017 ASH and 2015/2016/2017 AAAAI), as well as prior to the 2015 and 2017 European Competence Network on Mastocytosis (ECNM) annual meetings (Munich, Germany and Paris, France). These sessions were geared toward identifying challenges related to mast cell disorder treatment and involved efforts to brainstorm solutions for our primary challenges. As a result of these meetings, TMS is working with mast cell disease specialists on the development of the American Initiative in Mast Cell Diseases (AIM), with the goal of developing a network of mast cell disease centers throughout the Americas. 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 2015/2016, and by Catherine Weiler, MD, PhD, for 2017/2018, has also agreed to play a role in this initiative. An inaugural meeting for AIM is planned for May 2019 in the San Francisco Bay Area.
TMS has been working with researchers to make our mast cell disease community aware of patient surveys that are related to our disease set, including those developed and conducted by TMS. 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.
TMS is proud to announce publication of a collaborative article, Patient Perceptions in Mast Cell Disorders, in the Mastocytosis issue of Immunology and Allergy Clinics of North America. Inclusion of an article by TMS authors in this special issue, partnering with others in the field of mast cell diseases, is an exciting first for TMS!
The second set of results of the TMS 2010 online survey of patients with mast cell disorders, Patient Clinical Experiences and Beyond, have now been published!* Please click on the link above for more information and links to all reports on this survey.
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). ICD-10-CM codes related to MCAS became effective in October 2016 and updates to ICD-10-CM codes for mastocytosis were implemented in October 2017.
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:
- 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.
- TMS Chronicles (Winter 2014)