Retinoblastoma registry

Author:  Julia Dobke, Last modification: 2026/01/14 https://kinderkrebsinfo.de/doi/e132443

Retinoblastoma registry RB-­registry: a clinical registry for prospective data on retinoblastoma epidemiology and clinical course
Disease Retinoblastoma and other peadiatric tumours of the eye
Type Prospective, noninterventional, multicenter, observational clinical registry
Rationale / Objectives

Eye tumours in children are very rare. Retinoblastoma is the most common childhood eye tumour and occurs in early childhood. In Germany and Austria combined, approximately 50 children are diagnosed with retinoblastoma each year. The overall survival rate is very good at over 95%, but many patients are affected by impaired vision and long-term damage from treatment for the rest of their lives. Since retinoblastoma and other childhood eye tumours are very rare diseases, there is little data available for risk-adapted, evidence-based selection of the various treatments. For this reason, the Germany- and Austria-wide clinical registry RB-Registry will prospectively collect data on the epidemiology and disease progression of retinoblastoma. A neuroradiological and histopathological reference assessment will improve the comparability of the examination results at the various centres.
Therapy / Study arms

There are a variety of treatment options available for retinoblastoma. These include removal of the eye and various eye-preserving treatments such as cryotherapy, laser treatment, radiation or chemotherapy. These treatment options vary in their success rates and range of long-term effects. For children with a genetic predisposition, the increased risk of secondary tumours is particularly significant.
The RB Registry supports accompanying biological research
Inclusion Criteria
  • confirmed diagnosis of retinoblastoma by an experienced ophthalmologist or germline RB1 mutation
  • below the age of 18 years
  • no retinoblastoma-specific treatment prior to inclusion in RB-Registry
  • written informed consent of the primary caregivers
  • resident of Germany or Austria
Recruitment 750 in 14 years
Status Start: November 2013, end: July 2027
Principal Investigator Prof. Dr. med. Petra Ketteler
E-Mail petra.ketteler@uk-essen.de
Contact

Coordination

Prof. 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-Coordination

Dr. med. Madlen Reschke Charité - Universitätsmedizin Berlin Klinik f. Pädiatrie m. S. Onkologie/Hämatologie Augustenburger Platz 1 13353 Berlin Telefon +49 (30) 450 566 604 Fax +49 (30) 450 566 903 madlen.reschke@charite.de

Dr. med. Evangelina Antoniou Universitätsklinik Essen Pädiatrische Hämatologie und Onkologie Hufelandstr. 55 45122 Essen Telefon +49 (201) 723-2003 Fax +49 (201) 723 79002 Evangelia.Antoniou@uk-essen.de

Trial assistance

Bettina Appel Universitätsklinikum Essen Retinoblastom-Studienbüro, Kinderklinik III Hufelandstr. 55 45147 Essen bettina.appel@uk-essen.de

Wibke Eckhardt Universitätsklinikum Essen Retinoblastom-Studienbüro, Kinderklinik III Hufelandtsr. 55 45147 Essen wibke.eckhardt@uk-essen.de

Reference centre for ophthalmology

Prof. Dr. hc. Dr. med. Nikolaos Bechrakis Universitätsklinikum Essen Klinik für Augenheilkunde Hufelandstraße 55 45122 Essen Telefon +49 201 723 3569 Fax +49 201 723 3569 retina@uk-essen.de

Reference Centre for Human Genetics

Prof. Dr. med. Dietmar Lohmann Universitätsklinikum Essen Institut für Humangenetik Hufelandstraße 55 45122 Essen Telefon +49 201 723 4560 Fax +49 201 723 5900 dietmar.lohmann@uni-due.de

Reference centres for radiology

Dr. med. Sophia Göricke Universitätsklinikum Essen Klinik für Diagnostische und Interventionelle Radiologie und Neuroradiologie Hufelandstr. 55 45122 Essen Telefon +49 201 723 1501 Fax +49 201 723 1548 sophia.goericke@uk-essen.de

Prof. Dr. med. Marc Schlamann Uniklinik Köln Klinik für diagnostische und Interventionelle Radiologie Kerpener Str. 62 50937 Köln Telefon +49 221 478 82035 marc.schlamann@uk-koeln.de

Reference centres for radiotherapy

Prof. Dr. med. Beate Timmermann Universtätsklinikum Essen (AöR), Westdeutsches Protonentherapiezentrum Essen Direktorin der Klinik für Partikeltherapie Hufelandstraße 55 45147 Essen Telefon +49 201 / 723 6609 Sekret. 723 6611 beate.timmermann@uk-essen.de

Universitätsklinikum Essen, Klinik und Poliklinik für Strahlentherapie Prof. Dr. med. Martin Stuschke Dr. med. Maja Guberina Hufelandstraße 55 45147 Essen Telefon +49 201 723 2320 Fax +49 201 723 5960 strahlentherapie@uk-essen.de

Reference centre for pathology

Saskia Ting Institut für Pathologie Nordhessen Germaniastr. 7 34119 Kassel Telefon +49 561 50042-0 Fax 49 561 50042 200 ting@patho-nordhessen.de

Participants <br>Participating ophthalmological centers:<br> Klinik für Augenheilkunde, Universitätsklinikum Essen, Germany, Klinik für Augenheilkunde, Charité Berlin, Germany, Universitäts-Augenklinik Tübingen, Germany, Universitätsaugenklinik, Medizinische Universität Graz, Austria Participating oncological centers: all paediatric oncological centers of the GPOH