Retinoblastoma registry

Author: Julia Dobke, erstellt am: 2014/03/10, Last modification: 2019/09/17

Title RB-­registry: a clinical registry for prospective data on retinoblastoma epidemiology and clinical course
Disease Retinoblastoma
Type Prospective, noninterventional, multicenter, observational clinical registry
Problem / 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.
The registry offers therapy recommendations for all risk-groups.

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 220 in 5 years
Status Start: November 2013
Principal Investigator Dr. med. Petra Temming
Contact

Coordination

Dr. med. Petra Temming
Universitätskinderklinik Essen
Pädiatrische Hämatologie und Onkologie
Hufelandstr. 55
45122 Essen
Telefon +49 (201) 723-2003

Co-Coordination

Prof. Dr. med. Angelika Eggert
Cha­rité - Uni­ver­si­täts­me­di­zin Ber­lin, Cam­pus Vir­chow-​Kli­ni­kum
Kli­nik für Päd­ia­trie m.S. On­ko­lo­gie/Hä­ma­to­lo­gie
Augustenburger Platz 1
13353 Berlin
Telefon +49 030 450 566 132
Fax +49 030 450 566 906

Trial assistance

Jennifer Mäusert
Universitätsklinikum Essen
Klinik für Kinderheilkunde 3 Pädiatrische Hämatologie und Onkologie RB Registry Studienzentrale
Hufelandstr. 55
45122 Essen
Telefon +49 (201) 723 83045
Fax +49 (201) 723 5305

Participants
Participating ophthalmological centers:
• 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
Link(s) Literature/Publications