Consortium
The consortium has been founded with the scope of assembling real world data on treatment and outcomes of patients with melanoma and, prospectively, other types of advanced skin cancer on a European level.
The major goal is the creation and maintenance of a central registry on melanoma and defined subtypes of non-melanoma skin cancer by:
- Coordinating the generation of a comprehensive registry of clinical diagnostic, treatment, and outcome data from melanoma cases across different European countries.
- Ensuring high quality by defining enhanced data set structures and value sets for clinical registration in order to maintain:
- Comprehensiveness, such that a majority of incident cases can be covered
- High quality and levels of granularity for clinical data set items
- Practicability of data capture from routine clinical settings
Current members
- ADOReg ‐ German Skin Cancer Registry | ADO ‐ German Skin Cancer Society | Germany
- GEM Registry ‐ Spanish Multidisciplinary Melanoma Group Registry | GEM ‐ Spanish Multidisciplinary Melanoma Group | Spain
- DMTR ‐ Dutch Melanoma Treatment Registry | The Netherlands
- DMD ‐ Danish Melanoma Database | DAMMED ‐ Danish Oncology Melanoma Database | Denmark
- CSEEREG ‐ Central South Eastern European Registry | CSEEMEG ‐ Central South Eastern European Melanoma Expert Group | Croatia, Serbia, Bosnia and Herzegovina, Montenegro, North Macedonia
- RoMelaReg ‐ Romanian Melanoma Registry | Romania
- SwiMelaReg ‐ Swiss Melanoma Registry | Switzerland
- MelaExpert ‐ MelaExpert | PSSO ‐ Polish Society of Surgical Oncology | Poland
- HESMO ‐ Hellenic Society of Medical Oncology | Greece
- CNMR ‐ Clinical National Melanoma Registry | Italy
- BADO ‐ Bulgarian Association of Dermato-Oncology | Bulgaria
- Ella Lemelbaum Institute for Immuno-Oncology and Melanoma | Israel
- ALMelaReg ‐ Albanian Melanoma Registry | Albania
Committees
The scientific work of EUMelaReg is guided by a Steering Committee, comprising one representative of each partner, as well as theme-oriented Committees. In the course of the project, the formation of additional working groups will complement the organisational structure of EUMelaReg.
Steering Committee
Steering Committee
The EUMelaReg Steering Committee is responsible for the major financial, administrative, legal/ethical and scientific decisions regarding the registry.
Committees
Scientific and Data Access
This Committee is responsible for the development and work on SAP and ideas for regular evaluation reports and the development of guidelines for data access, including:
- confidentiality aspects, access rights, data destruction
- development and support of scientific projects
- definition, receiving and processing of evaluation projects
Current members:
- Inge Marie Svane | Denmark
- Ulrike Leiter-Stöppke, Peter Mohr, Michael Weichenthal | Germany
- Eva Muñoz Couselo | Spain
- Davorin Herceg, Daška Štulhofer Buzina | CSEEMEG
- Iwona Lugowska | Poland
- Daniela Zob, Serban Negru, Mihai Marinca | Romania
- Guiseppe Palmieri | Italy
- Johanna Mangana | Switzerland
- Alexander Gerasimov, Ahmed Kontilev | Bulgaria
- Nethanel Asher | Israel
- Sindi Shandro, Amanda Zeko | Albania
- Karijn Suijkerbuijk | The Netherlands
- Philipp Schnecko (Alcedis), Alexander Hildner (Alcedis) | CRO
Publication and Dissemination
This Committee works on the creation and establishment of publication and dissemination rules, including:
- publication guidelines and authorship rules
- definition of authorship rights, approval and submission process
- proposal and management of publication plan
- communication with medical writing team
Current members:
- John Haanen | The Netherlands
- Henrik Schmidt | Denmark
- Alexandra Hansen, Dirk Schadendorf | Germany
- Iván Márquez Rodas | Spain
- Mirna Šitum,Tomislav Duvančić | CSEEMEG
- Bozena Cybulska Stopa | Poland
- Vanna Chiarion, Paolo Ascierto | Italy
- Iva Gavrilova, Teodora Karanikolova | Bulgaria
- Nethanel Asher | Israel
- Enver Roshi | Albania
Liaison
The main focus of this Committee is to liaise with external partners. Areas of responsibility include:
- general industry contact
- communication to professional societies (e.g. ESMO, EADO, EORTC)
- scientific networking and visibility
- country intake planning
Current members:
- Peter Mohr | Germany
- Lars Bastholt | Denmark
- Teresa Puértolas | Spain
- Lidija Kandolf Sekulović, Željko Mijušković, Amina Jalovčić | CSEEMEG
- Iwona Lugowska | Poland
- Razvan Curca, Michael Schenker | Romania
- Paolo Ascierto, Mario Mandala | Italy
- Dimitrios Bafaloukos | Greece
- Iva Gavrilova, Teodora Karanikolova | Bulgaria
- Sindi Shandro | Albania
IT and Database
This Committee is responsible for the standardised data transfer to the EUMelaReg data warehouse, the implementation of DVP, a multi-language data dictionary and data privacy and protection guidelines, including:
- structure and specification of database and data warehouse
- harmonisation and implementation of existing structures
- support of local CROs
- data safety and privacy
- data quality aspects
Current members:
- Eva Ellebæk Steensgaard, Ulrich Heide Køhler | Denmark
- Michel Wouters | The Netherlands
- Michael Weichenthal, Ulrike Plötner | Germany
- Narcis Borrell | Spain
- Branko Dujovic, Emir Sokolovic | CSEEMEG
- Bozena Cybulska Stopa | Pawel Teterycz | Poland
- Alessandro Minisini | Italy
- Iva Gavrilova, Ahmed Kontilev | Bulgaria
- Aldo Shpuza | Albania
- Daniel Sorg (Alcedis) | CRO
Please click on the respective committee to learn more about its main tasks.