MONALISA: A Privacy-Preserving Infrastructure Supporting Liquid Biopsies to Monitor Relapsed Neuroblastoma.

The survival rate for high-risk neuroblastoma remains below 50%. Current monitoring methods are costly, invasive, and stressful for patients. MONALISA will evaluate liquid biopsies as a minimally invasive alternative, to enable frequent sampling and consequently early detection of genetic tumour markers.

Privacy-Preserving Linkage of Distributed Pseudonymised Datasets in a Virtual European Rare Disease Platform.

Secondary use of data for research purposes is especially important in rare diseases (RD), since, per definition, data are sparse. The European Joint Programme on Rare Diseases (EJP RD) aims at developing an RD infrastructure which supports the secondary use of data. Significant amounts of RD data are a) distributed and b) available only in pseudonymised format.

Use Cases Requiring Privacy-Preserving Record Linkage in Paediatric Oncology.

Large datasets in paediatric oncology are inherently rare. Therefore, it is paramount to fully exploit all available data, which are distributed over several resources, including biomaterials, images, clinical trials, and registries. With privacy-preserving record linkage (PPRL), personalised or pseudonymised datasets can be merged, without disclosing the patients' identities.