European Working Group (EWOG) of SAA, MDS and JMML in children and adolescents
Severe aplastic anemia (SAA), myelodysplastic syndromes (MDS) and juvenile myelomonocytic leukemia (JMML) represent examples of a large spectrum of rare bone marrow disorders manifesting in children and adolescents that have been challenging to diagnose and treat since their initial descriptions decades ago.
Facing these challenges medical doctors and researchers from Austria, Denmark, Germany, Italy and the Netherlands met the first time in 1993 to build the European Working Group of MDS with the aim to better understand the pathophysiology of MDS and JMML and thereby provide a better treatment for the patients. The group was later joined by Belgium, Czech Republic, Finland, Greece, Hungary, Ireland, Israel, Norway, Poland, Portugal, Slovakia, Slovenia, Spain, Sweden and Switzerland. In 2007, EWOG-SAA was established involving in principal the same countries/regions participating in EWOG-MDS. The “EWOGs” are intended to grow and are open to other participants.
To achieve their aims the EWOGs have set up an international registry collecting clinical data and biobanks archiving biomaterials, established diagnostic standards performed in national reference laboratories, developed therapy guidelines and fostered basic research elucidating disease mechanisms. The activities of the group have resulted in a better characterization of the broad spectrum of disorders documented in the registries including acquired and inherited bone marrow failure syndromes, MDS, predisposition syndromes, JMML and other rare myeloproliferative syndromes, and provided improved access to accurate diagnostic and therapy. The close international collaboration in the network offers a unique chance to facilitate clinical trials even in the difficult area of rare disease.
The core of the EWOGs is the network of national coordinators designated by their respective National Pediatric Hematology and Oncology Association. The national group consists at least of the national coordinator, a reference cytomorphologist, reference pathologist and reference cytogeneticist, and is usually complemented by dedicated physicians and researchers (members). The national coordinators elect a chair or so called coordinating investigator for EWOG-MDS and EWOG-SAA and also determine where the coordinating study center is located. Currently, the coordinating study center is located in Freiburg, Germany.
The groups meet at least once a year for a working meeting in one of the participating countries for an intensive exchange and discussion on further scientific and structural strategies. To reach a larger group and facilitate exchange of novel insights and innovative ideas among basic and translational researcher as well as clinical scientists in the field EWOG host an international symposium every second year.