Research Current Initiatives

UK-PIN members are very active in all aspects of research into primary immunodeficiency diseases from basic science, discovering of new diseases and new therapies. A number of clinical units are closely linked with University research institutes. Members also pride themselves through their international collaborations across the globe. The UKPID registry is increasingly becoming a useful research for tapping into unique patient groups. The 100,000 genome project is providing the impetus for setting up of Genomics England Clinical Interpretation Partnerships (GeCIP), and UK-PIN are involved in coordinating the recruitment and analysis of PID patients. To get involved in research or the 100,000 genome project in your region, please contact your academic representative and check the GeCIP page for updates.

News flashes: National and international research initiatives

To post national or international news please contact:

Newborn screening for SCID - Gaspar HB et al. The case for mandatory newborn screening for severe combined immunodeficiency (SCID). J Clin Immunol, 2014

United Kingdom Primary Immune Deficiency (UKPID) registry - Edgar JD et al. The United Kingdom Primary Immune Deficiency (UKPID) registry: report of the first 4 years' activity 2008-2012. Clin Exp Immunol, 2014

Gene therapy - Haceub-Bey-Abina S et al. A modified g-retrovirus vector for X-linked severe combined immunodeficiency. New Engl J Med, 2014. 

Prion surveillance in primary immunodeficiency patients - Helbert MR, et al. No evidence of asymptomatic variant CJD infection in immunodeficiency patients treated with UK-sourced immunoglobulin. Vox Sang. 2016.