The neuromodulation registry survey: A web-based survey to identify and describe characteristics of European medical patient registries for neuromodulation therapies in chronic pain treatment.

Abstract

Objectives: This survey aims to identify and describe the characteristics of registries for neuromodulation implantations used to treat chronic pain in Europe. Neuromodulation therapies such as spinal cord stimulation (SCS) are employed to treat chronic pain through implantable medical devices. These therapies are considered effective and are part of standard care in many countries. Registries can provide valuable real-world data to complement randomized controlled clinical trials.

Materials and methods: We conducted a web-based survey to gather information on registries monitoring neuromodulation implants for chronic pain treatment, and the survey was sent to 101 European centers.

Results: We received responses from 47 centers across 17 European countries. Of these, 27 centers reported using a registry for neuromodulation therapies to treat pain, which this study is based upon. National registries exist in Belgium, the Netherlands, the UK, as well as a national registry solution in France. Non-national registries were identified in Denmark, Finland, Norway, Spain, Sweden, Switzerland, and Turkey. We present an overview on data types collected from different registries. Categories of variables collected are quite consistent across registries and are mostly in line with recommendations for chronic pain. The primary objective of the registries is most commonly measuring clinical outcomes and complications, while guideline adherence is less commonly monitored. The most frequently reported challenge is the lack of personnel for planning, designing, and funding for running the registries.

Conclusions: We identified 27 centers utilizing neuromodulation registries for chronic pain treatment, with 23 providing detailed data. Although the survey's limitation is its findings are not generalizable to all registries, the findings offer key insights for the establishment and growth of registries in neuromodulation. Registries primarily aim to investigate the clinical and patient-reported outcomes, though variability in other clinical data collection remains a challenge for benchmarking and guideline adherence. Significant financial and organizational hurdles exist, which can be addressed through cooperative initiatives.