UK Primary Immunodeficiency (UKPID) Registry

Opportunities for researchers

Researchers, epidemiologists, research labs, or IEI centres who do not already participate in the UKPID Registry can request access to UKPID Registry patient data for study purposes.

Interested in submitting a research proposal? Get in touch by emailing scn-tr.ukpid.registry@nhs.net

What is the UKPID Registry?

The UK Primary Immunodeficiency (UKPID) Registry collects clinical and genetic data on patients with a primary immunodeficiency or secondary antibody deficiency living in the UK.

Since its establishment in 2005, the registry has grown to document over 200 different types of primary immunodeficiency and has collected data on more than 6,000 individuals.

With 38 contributing NHS hospitals across the UK, the registry represents one of the largest contributions to the European Society for Immunodeficiencies (ESID) Registry.

Our mission

Our mission is to provide an online registry for clinical and research data on all patients with an immunodeficiency in the UK.

We hope this data will enable researchers to estimate the disease burden of immunodeficiency and support the development of new treatments through drug surveillance and post-authorisation studies.

Contacts

Reach out to the registry team for queries, data access requests, and collaboration opportunities: scn-tr.ukpid.registry@nhs.net

Dr Ben Shillitoe – Chief Investigator

Catherine Stadon – Registry Coordinator

Research outputs

Inborn errors of immunity on the island of Ireland — a cross-jurisdictional UKPID/ESID Registry Report (Ryan, P. et al., 2022)

Initial presenting manifestations in 16,486 patients with inborn errors of immunity include infections and noninfectious manifestations (Thalhammer, J. et al., 2021)

Secondary C1Q deficiency in activated PI3KΔ syndrome type 2 (Hong, Y. et al., 2019)

Expanding clinical phenotype and novel insights into the pathogenesis of icos deficiency (Abolhassani, H. et al., 2019)

Immunoglobulin use in immune deficiency in the UK: A report of the UKPID and national immunoglobulin databases (Shillitoe, B., Hollingsworth, R., et al., 2018)

The United Kingdom Primary Immune Deficiency (UKPID) Registry 2012 to 2017 (Shillitoe, B. et al., 2018)

Outcomes of X-Linked Agammaglobulinaemia Patients (Shillitoe, B. et al., 2024)

Disease Evolution and Response to Rapamycin in Activated Phosphoinositide 3-Kinase δ Syndrome: The European Society for Immunodeficiencies-Activated Phosphoinositide 3-Kinase δ Syndrome Registry (Maccari, M.E. et al., 2018)

Clinical and laboratory features of seventy-eight UK patients with good’s syndrome (Thymoma and hypogammaglobulinaemia) (Zaman, M. et al., 2018)

Bronchiectasis and deteriorating lung function in agammaglobulinaemia despite immunoglobulin replacement therapy (Stubbs, A. et al., 2017)

Clinical and laboratory correlates of lung disease and cancer in adults with idiopathic hypogammaglobulinaemia (Brent, J. et al., 2016)

Spectrum and management of complement immunodeficiencies (excluding hereditary angioedema) across Europe (Turley, A.J. et al., 2015)

The use of databases in primary immunodeficiencies (Kindle, G., Gathmann, B. and Grimbacher, B., 2014)

The United Kingdom Primary Immune Deficiency (UKPID) registry: Report of the first 4 Years’ activity 2008–2012 (Edgar, J.D. et al., 2013)