Neuroblastoma Registry 2016

Das demographische NB Register 2016 dient als übergeordnete Datenbasis zur Ermöglichung:

• einer standardisierten Diagnosestellung,
• einer zentralen Referenzbegutachtung von Tumorproben, Knochenmark und Bildgebung zur Beurteilung der Ausbreitung des Tumors (Staging),
• einer standardisierten molekularen Baseline-Analyse,
• der Sammlung von Biomaterialien,
• der Korrelierung von molekularen und klinischen Daten,
• eines Langzeit-Follow-ups,
• der Zuweisung von Patienten in frühe klinische Studien,
• internationaler Kooperationen.

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).

• 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.

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