Retinoblastoma registry
Author: Julia Dobke, Last modification: 2022/07/13 https://kinderkrebsinfo.de/doi/e132443
Retinoblastoma registry | RB-registry: a clinical registry for prospective data on retinoblastoma epidemiology and clinical course |
---|---|
Disease | Retinoblastoma |
Type | Prospective, noninterventional, multicenter, observational clinical registry |
Rationale / Objectives |
Retinoblastoma is a childhood tumor of the retina that affects approximately 44 children in Germany and Austria each year. Overall survival in Europe exceeds 95%, but late effects are a major concern. Retinoblastoma is a very rare disease and published documentation for making evidence-based treatment decisions is scarce. The clinical registry, RB-registry, aims to gather prospective data on retinoblastoma epidemiology and clinical course in Germany and Austria to fill this gap in documentation. Reference evaluation for neuroradiology and histopathology will improve the comparability of the investigations performed at different participating centers. |
Therapy / Study arms |
The different therapies for retinoblastoma include enucleation and conservative treatments utilizing focal therapies as cryotherapy, laser coagulation, radiation or chemotherapy. These therapies vary in success rates and spectrum of late effects. Children with a mutant RB1 germline allele have an increased risk of developing second primary tumors later in life. |
Inclusion Criteria |
|
Recruitment | 220 in 5 years |
Status | Start: November 2013 |
Principal Investigator | Dr. med. Petra Temming |
petra.ketteler@uk-essen.de | |
Contact |
CoordinationProf. Dr. med. Petra Ketteler Universitätskinderklinik Essen Pädiatrische Hämatologie und Onkologie Hufelandstr. 55 45122 Essen Telefon +49 (201) 723-2003 Fax +49 (201) 723 5305 petra.ketteler@uk-essen.de Co-CoordinationProf. Dr. med. Angelika Eggert Charité - Universitätsmedizin Berlin Klinik für Pädiatrie m.S. Onkologie/Hämatologie Augustenburger Platz 1 13353 Berlin Telefon +49 030 450 566 132 Fax +49 030 450 566 906 angelika.eggert@charite.de Trial assistancePD Dr.med. Stefan Schönberger Universitätsklinikum Essen Kinderklinik, Abteilung für Onkologie und Hämatologie Hufelandtsr. 55 45147 Essen stefan.schoenberger@uk-essen.de |
Participants | <br>Participating ophthalmological centers:<br> • Klinik für Augenheilkunde, Universitätsklinikum Essen, Germany • Klinik für Augenheilkunde, Charité Berlin, Germany • Universitätsaugenklinik, Medizinische Universität Graz, Austria |
Weitere Informationen | Reference Centers: Ophthalmology: Prof. Dr. med. Norbert Bornfeld Zentrum für Augenheilkunde Universitätsklinikum Essen Hufelandstraße 55 D-45122 Essen +49 201 723 3569 +49 201 723 5748 Human genetics: Prof. Dr. med. Dietmar Lohmann Institut für Humangenetik Universitätsklinikum Essen Hufelandstraße 55 D-45122 Essen +49 201 723 4562 +49 201 723 5900 Radiation oncology: Prof. Dr. med. Wolfgang Sauerwein Klinik für Strahlentherapie Universitätsklinikum Essen Hufelandstraße 55 D-45122 Essen +49 201 723 2052 +49 201 723 5908 Radiology: Dr. med. Sophia Göricke PD Dr. med. M. Schlamann Klinik für Diagnostische und Interventionelle Radiologie und Neuroradiologie Universitätsklinikum Essen Hufelandstraße 55 D-45122 Essen +49 201 723 1501 +49 201 723 1548 Pathology: Prof. Dr. med. Klaus A. Metz Institut für Pathologie Universitätsklinikum Essen Hufelandstraße 55 D-45122 Essen +49 201 723 3345 +49 201 723 5926 |