Seltene Tumoren

Mertens, Rolf; Lassay, Lisa

doi:10.1007/3-540-29036-2_76

Cited by 1 publication

(1 citation statement)

References 59 publications

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“…In analogy, an analysis of the Polish rare tumor group has specifi cally pointed at the problem of carcinomas and tumors of the adult type, which are usually not enrolled into pediatric prospective protocols [2] . The compilation of rare pediatric tumors registered to the GCCR includes 158 children over a period from 1980 to 2003 [9] . A more recent, so far unpublished analysis of rare solid extracranial tumors registered to the GCCR between 1998 and 2007 is summarized in • ▶ Table 1 .…”

Section: Registry Datamentioning

confidence: 99%

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

Brecht¹,

Graf²,

Schweinitz³

et al. 2009

Klin Padiatr

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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.

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Section: Registry Datamentioning

confidence: 99%