Adult Rare Disease Register starts in Wales

Published: 28 February 2021

The 28 February is rare disease day and we’d like to mark this by announcing the establishment of an Adult Rare Disease Register in Wales as part of the Public Health Wales COVID response.

Many people were asked to shield as the UK went into the first COVID lockdown in 2020 as a consequence of their rare disease. This highlighted the benefit of having a registry of people with rare diseases in Wales. The register started in June 2020 concentrating on those conditions and treatments that cause immune suppression. To date over 2,500 individuals have been registered with over 40 rare diseases. These include conditions such as Behcet’s syndrome, Cystic Fibrosis and Still’s disease.

The Registry’s current aims are;

To monitor the impact of the Covid-19 pandemic on individuals/populations with rare diseases in Wales, particularly those groups that were advised to shield.
To gather epidemiological evidence to support the decision making process and communications for these groups going forward with a view to health protection, for example, policy decisions.
To identify the impact (if any) of reduced access to medical services on patients with rare diseases and to inform essential services priorities going forward.

Dr Graham Shortland OBE says: "As Chairman of the Rare Diseases Implementation Group for Wales I have seen the hard work in bringing the Adult Register to a reality.

“I know the previous positive outcomes for children because of the work of CARIS and I believe this is a major step forward for adult patients with Rare Diseases”.

Sian Bolton, Transition Director, Knowledge Directorate says: “Public Health Wales is pleased to be able to expand on the excellent work of CARIS to include adults with rare diseases. This is a vital part of our response to COVID-19 and hope that this work will be built on in the coming months.”

For further information on CARIS (Congenital Anomaly Registration & Information System) click the here.