International Thymic Malignancies Interest Group: A Way Forward

Like other rare diseases, progress in thymic malignancies has been slow at best. The literature consists mainly of single-institution retrospective studies, usually spanning several decades. Furthermore, ambiguities in commonly used terms and poor description of the details of patient selection and treatment approach further limit the conclusions that can be reached from these data. There have been few prospective studies or clinical trials. Although a few centers with experience in thymic conditions have achieved some recognition, there is a general sense that because almost no one knows much about these diseases, it is acceptable for a physician with very limited experience to do whatever he/she thinks is best when treating an occasional patient. Persistence of misleading terms such as “benign thymoma,” which are no longer tenable in the modern era, contributes to this problem. Progress and understanding in this field will continue to be limited unless a better way forward is found. To address this problem, the Foundation for Thymic Cancer Research (an organization founded by patients and family members) organized several conferences of people who have published in this field (in New York [2007] and Houston [2008]). This culminated in cosponsorship, together with the National Institutes of Health (NIH), of the first International Conference on Thymic Malignancies in Bethesda in August 2009. During the course of these meetings, it was clear that real progress would require creation of a scientific infrastructure to foster collaborative research. The concept of a scientific organization dedicated to thymic malignancies and other mediastinal diseases was born in late 2008. Preliminary work during the first half of 2009 led to the implementation of a transitional structure in the conference held in August 2009 at the NIH. The name International Thymic Malignancies Interest Group (ITMIG) was chosen. The work of the transitional workgroups led to the initiation of ITMIG as a formal organization at the first ITMIG conference in New York on May 5 and 6, 2010. This conference generated much enthusiasm and excitement and was attended by 117 participants from more than 20 countries and all continents except Africa and Antarctica. Many professional organizations have come forward to support the creation of ITMIG, including the American Association for Thoracic Surgery, the European Association of Cardiothoracic Surgeons, the European Society for Myasthenia Gravis, the European Society of Thoracic Surgeons, the Fleischner Society, the General Thoracic Surgical Club, the International Association for the Study of Lung Cancer, the Japanese Association for Research on the Thymus, the Japanese Association for Thoracic Surgery, the mediastinal workgroup of the European Society of Pathologists, the Myasthenia Gravis Foundation of America, the Society of Thoracic Radiologists, the Society of Thoracic Surgeons, and the Thoracic Oncology Network of the American College of Chest Physicians. The mission of ITMIG is to promote the advancement of clinical and basic science pertaining to thymic malignancies and related mediastinal conditions. ITMIG is an academic organization that provides structure, organization, and scientific rigor to research in these diseases. The primary goals of ITMIG are to provide infrastructure for international collaboration, promote a scientifically based approach, and facilitate dissemination of knowledge about thymic malignancies and other mediastinal diseases. ITMIG is a registered not-for-profit organization. In May 2010, ITMIG had approximately 250 members from North and South America, Europe, Asia, and Australia. It is a multispecialty organization, involving thoracic surgeons, medical and radiation oncologists, pulmonologists, radiologists, pathologists, neurologists, and basic science researchers. In May 2010, the first President, Vice President, Secretary, Treasurer, and councilors were elected for 2-year terms on the steering committee. The original transitional workgroups have morphed into standing committees and workgroups and are implementing the initial ITMIG projects.