Neuroblastoma Registry 2016

Author:  Julia Dobke, Last modification: 2024/10/29 https://kinderkrebsinfo.de/doi/e187752

Neuroblastoma Registry 2016 Prospective multicentre registry for neonates, infants, children, adolescents, and adults with newly diagnosed and/or relapsed neuroblastic tumours (NB Registry 2016)
Disease Newly diagnosed or relapsed neuroblastic tumour (neuroblastoma, ganglioneuroblastoma and ganglioneuroma)
Type Registry, without treatment recommendation
Rationale / Objectives

The demographic NB Registry 2016 serves as an overarching database to enable:

  • standardised diagnosis,
  • a central reference assessment of tumour samples, bone marrow and imaging to assess the spread of the tumour (staging),
  • a standardised molecular baseline analysis,
  • the collection of biomaterials,
  • the correlation of molecular and clinical data,
  • a long-term follow-up,
  • the allocation of patients to early clinical trials,
  • international collaboration.
Therapy / Study arms

The registry gives no treatment recommendation. Recommendations are published in the journal Klinische Pädiatrie (Simon T et al., Klin Padiatr 2017; 229: 147–167) and the AWMF guideline 025 – 008 (2019).

Inclusion Criteria
  • Diagnosed or suspected neuroblastic tumour: Either histologically or cytologically proven neuroblastic tumors such as neuroblastoma, ganglioneuroblastoma or ganglioneuroma (at diagnosis or at relapse)
  • OR suspected neuroblastoma in newborns and infants (e.g. suprarenal lesions), detected at least during two independent ultrasound investigations,
  • any age,
  • any stage,
  • any MYCN status,
  • written informed consent of parents or legal guardians and/or written informed consent of the patient, if appropriate according to age and status of psycho-intellectual development.
Recruitment approx. 150 per year
Status Start: 01/01/2017, until further notice
Principal Investigator Prof. Dr. med. Thorsten Simon
E-Mail thorsten.simon@uk-koeln.de
URL https://kinderklinik.uk-koeln.de/forschung/neuroblastom-studie/
Contact

Trial Office Berlin: Counseling on high-risk neuroblastoma
Tel.:+49 (0)30 450 666 114
Fax:+49 (0)30 450 566 901
neuroblastomstudie@charite.de

Trial office Cologne: Counseling in general / on risk group classification with regard to patients with low- or intermediate-risk neuroblastoma including relapses within this group, counseling on trial NB2004 patients:
Tel.: +49 (0)221 478 6853
Fax: +49 (0)221 478 6851
neuroblastomstudie@uk-koeln.de

Trial office Greifswald: Counseling with regard to patients with neuroblastoma relapse who have not yet been included in the NB 2016 Registry
Tel.: +49 (0)3834 86 6325
paedonko@uni-greifswald.de

Principal Investigator

Prof. Dr. med. Thorsten Simon Klinikum der Universität zu Köln Klinik für Kinderheilkunde: Hämatologie/Onkologie Kerpener Straße 62 50924 Köln Telefon +49 (221) 478 4380 Fax +49 (221) 478 4689 thorsten.simon@uk-koeln.de

National Coordinator HR Neuroblastoma

Prof. 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

National Coordinator SR und IR Neuroblastoma

Dr. med. Barbara Hero Klinikum der Universität zu Köln Klinik für Kinderheilkunde: Hämatologie/Onkologie Kerpener Straße 62 50924 Köln Telefon +49 (221) 478 6853 Fax +49 (221) 478 6851 barbara.hero@uk-koeln.de

National Coordinator Recurrent Disease

Prof. Dr. Holger Lode Universitätsklinikum Greifswald Allg. Pädiatrie mit Poliklinik/Päd. Onkologie Ferdinand-Sauerbruch-Str. 17475 Greifswald Telefon +49 (3834) 86 6301 Fax +49 (3834) 86 6410 holger.lode@uni-greifswald.de

Sponsoring German Childhood Cancer Foundation (Deutsche Kinderkrebsstiftung)