Table 1 Clinical centres and networks data registries involved in data collection with an estimation of cases for neuroblastoma (NB) and diffuse intrinsic pontine glioma (DIPG)

Clinical partners for NB and DIPG

University and Polytechnic Hospital La Fe, Spain

Children’s Cancer Research Institute, Austria

University Hospital Cologne, Germany

Pisa University Hospital, Italy

Target sample: approximately 900 cases with imaging, clinical, and molecular data.

Data type: imaging (magnetic resonance, computed tomography, ¹³¹I-metaiodine-benzylguanidine scintigraphy and single-photon emission tomography, positron emission tomography/computed tomography), histology (if available), complete molecular biology studies according to SIOPE (blood, urine, and bone marrow, cerebrospinal fluid), genetic (next generation sequencing, fluorescence in situ hybridisation), and clinical data (patient profile, prescribed treatment, survival).

Data on patients with NB

GPOH

Target sample: approximately 1,000 NB (high, low, and intermediate risk) patients participants in academia-promoted clinical trials.

Data type: diagnosis and longitudinal data (clinical, follow-up, and biology data for all patients registered in GPOH database).

Data on patients with DIPG

SIOPE registry

Target sample: approximately 700 DIPG patients from European Union countries, both inside and outside clinical trials.

Data type: diagnostic and follow-up magnetic resonance scans linked to e-data transmittal form including demographics, medical history, and physical exam at time of diagnosis, results from radiological, results from pathological review (if available), treatment (including radiotherapy, chemotherapy, surgery and supportive), clinical data, and last known status of the patient.