A Qualitative Literature Review on Linkage Techniques for Data Integration

The data linkage techniques ”entity linking” and ”record linkage” get rising attention as they enable the integration of multiple data sources for data, web, and text mining approaches. This has resulted in the development of numerous algorithms and systems for these techniques in recent years. The goal of this publication is to provide an overview of these numerous data linkage techniques. Most papers deal with record linkage and structured data. Processing unstructured data through entity linking is rising attention with the trend Big Data. Currently, deep learning algorithms are being explored for both linkage techniques. Most publications focus their research on a single process step or the entire process of ”entity linking” or ”record linkage”. However, the papers have the limitation that the used approaches and techniques have always been optimized for only a few data sources

Neuroblastoma in Spain: Linking the national clinical database and epidemiological registries – A study by the Joint Action on Rare Cancers

Purpose: Linkage between clinical databases and population-based cancer registries may serve to evaluate Eu ropean Reference Networks’ (ERNs) activity, by monitoring the proportion of patients benefiting from these and their impact on survival at a population level. To test this, a study targeting neuroblastoma (Nb) was conducted in Spain by the European Joint Action on Rare Cancers. Material and methods: Subjects: Nb cases, incident 1999–2017, aged < 15 years. Linkage included: Spanish Neuroblastoma Clinical Database (NbCDB) (1217 cases); Spanish Registry of Childhood Tumours (RETI) (1514 cases); and 10 regional population-based registries (RPBCRs) which cover 33% of the childhood population (332 cases). Linkage was semiautomatic. We estimated completeness, incidence, contribution, deficit, and 5-year survival in the databases and specific subsets. Results: National completeness estimates for RETI and NbCDB were 91% and 72% respectively, using the Spanish RPBCRs on International Incidence of Childhood Cancer (https://iicc.iarc.fr/) as reference. RPBCRs’ specific contribution was 1.6%. Linkage required manual crossover in 54% of the semiautomatic matches. Five-year survival was 74% (0–14 years) and 90% (0–18 months). Conclusions: All three databases were incomplete as regards Spain as a whole and should therefore be combined to achieve full childhood cancer registration. A unique personal patient identifier could facilitate such linkage. Most children have access to Nb clinical trials. Consolidated interconnections between the national registry and clinical registries (including ERNs and paediatric oncology clinical groups) should be established to evaluate outcomes