Networking for Children and Adolescents with Very Rare Tumors: Foundation of the GPOH Pediatric Rare Tumor Group

Abstract

In comparison to cancer in adults, virtually all cancers of childhood and adolescence are rare. Nevertheless, there is a rather ill-defined group of tumors that are not only exceptionally rare but also do not fall into the major clinical categories of childhood cancers. Thus, a substantial proportion of these exceptionally rare tumors are not registered within clinical registries or prospective therapy optimization studies. Only recently, major attention has been drawn to the diagnostic assessment and treatment of children and adolescents with such orphan diseases. In 2006, the RARE TUMOR GROUP has been established within the German Society of Pediatric Oncology and Hematology (GPOH). This working group includes experts from Pediatric Oncology, Pediatric Surgery, Pediatric Pathology, Medical, Dermatologic and Radiation Oncology as well as Pediatric Epidemiology. The major aim of the rare tumor group is to integrate these patients into the diagnostic and therapeutic network successfully established in the pediatric oncologic society. Thus, the group aims at fostering the exchange of experience in the treatment of rare tumors between medical centers and to include patients in the diagnostic and therapeutic reference network. In addition, an information platform shall be established that will be accessible to treating physicians, patients and their parents. More information and better registration shall be established by active data accrual on a regular basis and by the implementation of a data base including diagnostic and therapeutic data of patients with rare tumors. These efforts as presented in this article as well as an intensified international collaboration will allow us to provide children and adolescents with rare tumors the best possible care.

Gastric Adenocarcinoma Presenting with Gastric Outlet Obstruction in a Child

“…Malignancies of the gastrointestinal tract are very rare in children, accounting for 1.2% of pediatric malignancies [1]. Malignant gastric tumors that affect children are mostly lymphomas and soft-tissue sarcomas.…”

The founding of the European Cooperative Study Group on Pediatric Rare Tumors – EXPeRT

“…The first decade of the new millennium has apparently inspired the launch of comprehensive projects dedicated specifically to rare pediatric tumors. National cooperative groups focusing on this field have been founded in several European countries, including: the Italian TREP (Tumori Rari in Età Pediatrica -Rare Tumors in Pediatric Age) project, begun in 2000 under the auspices of the Associazione Italiana Ematologia Oncologia Pediatrica in cooperation with the Società Italiana Chirurgia Pediatrica [3,5]; the Rare Tumour Working Group of the United Kingdom's Children's Cancer & Leukaemia Group, which started operating in 1997 [6]; the Polish Pediatric Rare Tumors Study Group, founded in 2002 as part of the Polish Pediatric Solid Tumors Study Group [7]; the German Rare Tumor Working Group, created in 2006 as part of the German Society of Pediatric Oncology and Hematology [8,9]; and the French groupe francais des tumeurs rares de l'enfant, founded in 2007 by the French Pediatric Oncological Society in association with the French National Cancer Registry [10]. Although the organizational aspects and levels of activity of these different schemes varied considerably, all these groups were able to collect clinical data and establish a collaborative network with other specialists (i.e., adult oncologists, surgeons, endocrinologists and dermatologists) involved in managing the tumors of interest, as well as prompting research, developing diagnostic and therapeutic recommendations, and providing treatment centers with an advisory service.…”

Die Entwicklung derKlinischen Pädiatrieseit Einführung des Online-Redaktionssystems und die Doppelblind-Begutachtung von Manuskripten

“…Von ä hnlicher Wichtigkeit kann die rasche Prozesssierung eines Berichtes sein, der z. B. ü ber den Aufbau eines Registers mit Internet-basiertem Netzwerk informiert und zur Einbringung von Patienten einl ä dt [2] .…”