The SIOPEN Advocate Committee serves as a structured framework by which SIOPEN can work more closely with the patient and parent community to improve survival and quality of survival for children diagnosed with neuroblastoma. The Committee is tasked with representing the interests of these stakeholders and providing valuable insights to enhance SIOPEN’s activities.

Specific deliverable objective(s) for next 1 year: Molecular diagnosis : standardisation of ALK molecular diagnosis in all SIOPEN ; Biology reference laboratories ; Round robin quality control and publication of results, Biology Cohort Studies: genetic alterations in LINES G8 , L2 >18m, no MNA.

Aims

• to perform immunocytological analysis on BM aspirates from HR-NBL-2 patients, review and publish results

• to contribute with MRD results from BM aspirates from HR-NBL-2 patients to work/research of Liquid Biopsy Committee

• to perform research on disseminated tumor cells (DTC)

The SIOPEN Molecular Monitoring Group collaborates to develop and validate high-precision minimally invasive methods to objectively assess disease status and patient response, with the goal of improving outcomes for children with neuroblastoma.

The SIOPEN CTC was established in June 2020, with the aim of facilitating the opening and running SIOPEN clinical trials.

The mission of the clinical research team is to contribute to the advancement of treatment for childhood cancer as well as the integrity of the research itself.

The CRC/TN play an essential role in the conduct of clinical research and are crucial in assuring that the scientific accuracy of data is of highest quality.

Aims:

• To facilitate partition of resources between structural needs and research within the SIOPEN community

• To allocate SIOPEN financial support for scientific projects in conjunction with the strategy of SIOPEN and achieve a sustainable financial situation

Aims

• Be recognised as conduit for NBL NDD in Europe

• Organise membership of NDD

• Formalise links with COG/NANT (and others)

• Drive preclinical NBL testing in Europe

• Deliver on set up of X number of new trials

Specific deliverable objective(s) for next 1 year:

• To promote the on-line storage of all cross-European MIBG /FDG/ F-DOPA studies

• To strengthen the expert panel involved in MIBG image re-view for HR-NBL2 and VERITAS protocols

Aims

Specific deliverable objective(s) for next 1 year:

• continue online review of histology of LINES patients

• review trephine biopsies from HR-NBL2 patients

Aims:

• Create a SIOPEN Registry for the long outcome/ post-protocol evaluation and monitoring of all NBL patients

• Specific toxicities (ototoxicity, second malignancies, endocrine-Growth-myoskeletal outcome, renal toxicity): Enhance patient registration, data analysis, publication of SIOPE experience

• Enhance interchange with other partners: PanCare, COG LEAHRN, National Registries

Aims

• to provide criteria for structured reporting of imaging of neuroblastoma and creation of case report forms, aiming to warrant a uniform, systematic approach in reporting of neuroblastoma among centres and thus to improve the quality of data available

The main aim of the statistical committee is to provide expertise and support in all issues related to statistical methodology for all scientific activities of the SIOPEN. Focusing on clinical research, the tasks range from statistical support in the design of clinical trials and research projects, the statistical analysis of data as well as collaboration in the publication of our results.

Specific deliverable objective(s) for next 1 year:

• SIOPEN HR NBL2 protocol should be amended for metastatic site RT

• LINES: drafting manuscript on patients who received RT and the outcome of patients in group 8

• Transferring the results and experiences of RTQA for neuroblastoma (Kelly et. al. 2022; Jazmati et al. 2022) into new protocols/projects or amendments of existing protocols

The publication of an international standard for systematic surgery report for neuroblastoma as a SIOPEN, COG and GPOH initiative (e-CRF). This report comprises three major parts (general information, intraoperative details based on the list of IDRFs and complications) and is now integrated in the new HRNBL2 hisgh risk protocol. It aims to be filled out on line by the surgeon him/herself, or the referent surgeon of the country and to be inserted in the others neuroblastoma protocols. The aim is now to disseminate this form, evaluate its accessibility and usefulness in the future protocols and to use it to do specific studies on surgical questions.