Background: The National Institute of Health and Care Excellence makes use of registers to collect data for technologies that require more evidence to inform future decision-making. This is particularly so for the Interventional Procedures Programme, which since 2003 has produced guidance for procedures that are typically not well established, meaning that named registers are often recommended for future data collection.
Methods: We constructed a questionnaire based on quality standards for recommended registers defined by the Interventional Procedures Programme. All guidance from 2003 to 2016 were reviewed to identify recommended registers and compile a list of corresponding registries. We made a maximum of four attempts to contact each registry. Each register was scored on seven quality standards: accessibility, responsiveness, data publication, data coverage, data validity, independent oversight and data protection, with a maximum of 14 points.
Results: We obtained responses from 17 out of 24 eligible registries, a response rate of 70.8%. The mean total score was 8.5 (standard deviation 2.9, range 4-14). Overall, the quality of recommended registers was disappointing, with a split between large registries that scored highly across all standards and smaller registries that scored poorly.
Conclusions: This the first study to our knowledge to assess the quality of registers recommended by health technology assessment agencies. Only a limited number of registers were mature enough to deliver evidence of sufficiently high quality to inform funding decisions. A standardised quality assessment tool is needed to evaluate registers before their recommendation for observational data gathering by decision-making bodies.