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Horn of plenty:Value of the international registry for pediatric chronic myeloid leukemia

World Journal of Clinical Oncology 2020年第6期11卷 308-319页

作者： Meinolf Suttorp Markus Metzler Frédéric Millot Pediatric Hemato-Oncology Medical FacultyTechnical University DresdenDresden D-01307Germany Pediatric Oncology and Hematology Department of Pediatrics and Adolescent MedicineUniversity Hospital ErlangenErlangen D-9105Germany Inserm CIC 1402 University Hospital PoitiersPoitiers F-86000France

Chronic myeloid leukemia(CML)in minors is a rare disease which can be effectively treated by tyrosine kinase inhibitors(TKIs)since the year 2000.A majority of pediatricians will encounter one or two CML patients in the course of their careers and will typically have to rely on written information along with their own intuition to provide *** of response to TKIs and of agespecific side effects has an impact on the design of pediatric CML trials in many ways aiming to contribute toward greater predictability of clinical *** from a registry on a rare disease like CML offers the enormous benefit of enabling treating physicians to interact and share their collective *** International Registry on Pediatric CML(IR-PCML)was founded at Poitiers/France almost 10 years *** then,the number of collaboration centers and in parallel of registered patients continuously increased(>550 patients as of December 2019).Ideally,from a given treatment center in a country data are transferred to a national coordinator who interacts with the *** the sense of quality assurance,the registry can offer dissemination of knowledge on state-of-the-art diagnostics(including reference appraisal),optimal treatment approaches,and follow-up procedures within a network that is exerting its strength via *** continuous growth during the recent years,very rare subgroups of patients could be identified(e.g.,CML diagnosed at agedata on this rare leukemia is the basis for the considerable success of bringing new therapeutics into clinical use.

关键词： Pediatric chronic myeloid leukemia International registry Rare disease collaboration and data exchange

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