APDS Registry
The APDS registry is an ESID Registry level 3 project, collecting data of patients with the combined immunodeficiency Activated PI3-Kinase Delta Syndrome (APDS).
Information on the first steps is provided on the ESID website:
Link for APDS online documentation
Lead investigators
Anita Chandra, Cambridge, UK
Maria Elena Maccari, Freiburg, Germany
maria.elena.maccari@uniklinik-freiburg.de
Sven Kracker, Paris, France
APDS - Registry
Total number of patients registered: 250
Registration still open.
Publications
- 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
- Activated phosphoinositide 3-kinase δ syndrome: Update from the ESID Registry and comparison with other autoimmune-lymphoproliferative inborn errors of immunity
- Comparative efficacy of leniolisib (CDZ173) versus standard of care on rates of respiratory tract infection and serum immunoglobulin M (IgM) levels among individuals with activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS): an externally controlled study
Cooperation & Funding
The Medical Center - University of Freiburg - Center for Chronic Immonodeficiency (CCI) is member of the European Reference Network for Primary Immonodeficiencies, Autoinflammatory Disorders, Autoimmune Diseases, Paediatric Rheumatic Diseases (ERN RITA). In this context it cooperates with other members from different states in carrying out this study.
Further cooperation and funding partners
- ESID: Website
MEDICAL CENTER - UNIVERSITY OF FREIBURG
Center for Chronic Immunodeficiency (CCI)
at Center for Translational Cell Research (ZTZ)
Breisacher Str. 115
D-79106 Freiburg
Tel. +49 (0) 761 270-77771
Fax +49 (0) 761 270-73770
Prof. Markus Seidel
Chairperson Working Party ESID Registry
Dr. Maria Elena Maccari
APDS lead investigator
maria.elena.maccari@uniklinik-freiburg.de
Dr. rer. nat. Annette Uhlmann
APDS Project Coordinator
annette.uhlmann
@uniklinik-freiburg.de