Establishing an adult rare diseases surveillance registry during the COVID-19 pandemic: the Wales experience

In March 2020 thousands of people were asked to ‘shield’ if they had medical conditions likely to put them at higher risk of serious illness and/or death following COVID-19 infection. Data already held by Public Health Wales allowed identification of children in Wales with conditions on the ‘shielding’ (clinically extremely vulnerable) list. Identifying adults with rare diseases on the shielding list proved more challenging. We describe the rapid establishment of an Adult Rare Disease Register for Wales as part of the pandemic response. We describe the development of the register, including collaboration with UK and international colleagues, database development, data governance and protection considerations and stakeholder engagement including the third sector. The approach to data collection including the challenges faced are outlined with examples. A national population-level registry was successfully established with limited resources in response to and during a pandemic. As of July 2024, it included data on over 5,500 individuals with 35 diseases. For others developing such a register, it is recommended that advice is sought from staff in an established register. Programme management should be secured to identify potential barriers and drive the work forwards with a solution-based approach. Careful consideration of the digital solution is advised along with establishing connections with stakeholder groups that include patient representatives to initiate a co-production approach. The completeness of case ascertainment from data sources will vary by disease. Therefore, register teams will need flexibility to explore and expand their data sources as the register matures.