What is ITMIG?

Overview

The mission of ITMIG is to promote the advancement of clinical and basic science pertaining to thymic and other mediastinal malignancies and related 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, in order to improve the outcomes of people diagnosed with such a condition. ITMIG is a registered not-for profit organization.

As of 2014 ITMIG has over 600 members from North and South America, Europe, Africa, Asia and Australia. It is a multispecialty organization, involving thoracic surgeons, medical and radiation oncologists, pulmonologists, radiologists, pathologists, neurologists, and basic science researchers.

ITMIG has been recognized by the major bodies governing the organization of cancer activities: the International Union against Cancer (UICC) and the American Joint Committee on Cancer (AJCC). Furthermore, ITMIG has been embraced by other professional organizations in related fields (see list below). ITMIG has undertaken a number of global initiatives, which are described in more detail and with ongoing updates on other pages of this website.

Background

Like other rare diseases, progress in thymic malignancies has been slow at best. The literature has consisted mainly of single-institution retrospective studies, usually spanning several decades. Furthermore, ambiguities in commonly used terms and poor description of details of the patient selection and the treatment approach further limited the conclusions that could be reached from this data. There have been few prospective studies or clinical trials. Although a few centers are recognized for their experience in thymic conditions, there has been a general sense that because little is known 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. A major change was needed to disseminate existing knowledge, facilitate international collaboration and promote research in these diseases.

The Birth of ITMIG

The Foundation for Thymic Cancer Research (FTCR) was founded in 2003 by patients and family members with a thymic malignancy who were determined to change the status quo of limited knowledge and understanding of this disease. The FTCR organized several conferences of people who have published in this field (in New York in 2007 and Houston in 2008). This culminated in co-sponsorship, together with the National Institutes of Health (NIH), of the first International Conference on Thymic Malignancies in Bethesda in August of 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 at the August conference at the NIH. The work of the transitional workgroups led to the initiation of ITMIG as a formal organization at the 1st 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 over 20 countries. Since then we have only gained recognition and support of the medical community across all disciplines.

Relationships with other Organizations

ITMIG has a very close relationship with the Foundation for Thymic cancer Research (FTCR), although these are separate organizations. The FTCR is a major source of funding for ITMIG initiatives; however, the FTCR also has a mission towards patient education and support.

ITMIG has a strong association with the International Association for the Study of Lung Cancer (IASLC), an organization that includes in its focus all chest malignancies, not just lung cancer. ITMIG and IASLC are collaborating under the auspices of the UICC and AJCC to develop a statistically based stage classification system (currently there is no official staging system).

ITMIG has been embraced by other professional organizations in related fields, including the American Association for Thoracic Surgery (AATS), the European Association of Cardiothoracic Surgeons (EACTS), the European Society for Myasthenia Gravis (EuroMG), the European Society of Thoracic Surgeons (ESTS), the Fleischner Society, the General Thoracic Surgical Club (GTSC), the International Association for the Study of Lung Cancer (IASLC), the Japanese Association for Chest Surgery (JACS), the Japanese Association for Research on the Thymus (JART), the mediastinal workgroup of the European Society of Pathologists, the Myasthenia Gravis Foundation of America (MGFA), the Society of Thoracic Radiologists (STR), the Society of Thoracic Surgeons (STS) and the Thoracic Oncology Network of the American College of Chest Physicians (ACCP).

Growth of ITMIG

ITMIG has had a steep upwards trajectory. Only 9 months after forming a transitional structure, ITMIG became a formal organization, with legal recognition, bylaws, and with approximately 20 active workgroups and committees. Since inception a tremendous amount has been accomplished. ITMIG had clearly demonstrated an ability to get the global medical community interested in thymic disease collaboratively engaged. In 2012 ITMIG was published in the ASCO Educational book titling “ITMIG as a Role Model for Rare Diseases.”

ITMIG held its first annual meeting in May of 2010. Subsequent meetings have been held in conjunction with The World Conference on Lung Cancer and in Japan with the Asia Pacific Lung Cancer Conference and also near the National Institute of Health in the USA. As an organization ITMIG has held several pathology workshops and an additional meeting where a global consensus of definitions and policies was achieved (See special issue of the Journal of Thoracic Oncology, June, 2011.)

ITMIG will be working in conjunction with The International Staging Committee of IASLC to develop a validated stage classification system for the next iteration of the official stage classification of tumors (2017).

The ITMIG retrospective database is an astounding success. Approximately 50 institutions around the globe have gone through their institutions clinical experience and contributed their data, thus creating an unprecedented global database of over 6000 cases. This resource permits progress in ways that have never before been possible.

Looking towards the future a big focus for the organization will be research. Clinical and basic research studies are in various stages of development and will provide a solid basis for optimal, evidence-based treatment and original thinking leading to novel insights.

Funding

Funds to get ITMIG off the ground came from the Foundation for Thymic Cancer Research (FTCR). ITMIG has relied primarily on philanthropic support. Several other organizations have come forward and given ITMIG start-up funds, including IASLC, AATS, ESTS, EACTS, and the Yale Cancer Center. Several industry partners have also provided unrestricted grants, including Atrium, Covidien, Ethicon, Medela, Storz and Thoramet. Other grants, such as from the NCI, have been applied for. Unfortunately federal grant money is limited and a rare disease is at a major disadvantage to compete for the limited federal funding that is available. Another problem is that federal money is primarily available to fund specific research projects once an infrastructure is in place, and not to develop the infrastructure that is the prerequisite. ITMIG has been able to raise enough funds to get started, but full implementation of the projects being developed will require identification of additional funding. ITMIG is continuing to pursue all potential funding opportunities that are available for an orphan disease. Any assistance is much needed and appreciated.