Objective Primary immunodeficiencies (PIDs) belong to the group of rare diseases. Due to their rarity, they can only be studied through transnational studies. European research in the field of primary immunodeficiencies has a good track record and this application is built upon existing research infrastructures in order to maximise the scientific outcome and be cost-beneficial. The application focuses on four key objectives: 1. To increase our understanding of the aetiology of PIDs, and identify novel mutations and new disease genes. 2. To carry out epidemiological studies in order to determine the prevalence of PIDs in Europe. 3. To establish and evaluate harmonised guidelines for the diagnosis and treatment of PIDs. 4. To improve the awareness of PIDs among the European population. In order to achieve these aims we will develop a new, secure, Internet-based patient registry, which comprises several novel features and standards. This database will form a platform for studies of demographics, the harmonisation and development of new diagnostic and treatment strategies, and the identification of novel disease genes. This will also improve our knowledge regarding complex mechanisms involved in the immune responses.We believe that the outcome of this proposal will influence the field of primary immunodeficiencies in many respects. The results will benefit the European population, especially the estimated 60,000 patients suffering from these diseases. Hopefully the implementation of adequate treatment strategies throughout Europe will reduce the costs to the society. Moreover, we hope that many of the strategies and instruments that will be developed can also be used for the benefit of patients having other rare diseases. Fields of science natural sciencescomputer and information sciencesdatabasesnatural sciencesbiological sciencesgeneticsmutation Keywords immunodeficiencies primary immunodeficiency diseases Programme(s) FP6-POLICIES - Policy support: Specific activities covering wider field of research under the Focusing and Integrating Community Research programme 2002-2006. Topic(s) POLICIES-2.2 - Public health issues, including epidemiology contributing to disease prevention and responses to emerging rare and communicable diseases, allergies, procedures for secure blood and organ donations, non-animal test methods Call for proposal FP6-2003-SSP-3 See other projects for this call Funding Scheme STREP - Specific Targeted Research Project Coordinator KAROLINSKA INSTITUTET EU contribution No data Address Nobels väg 5 STOCKHOLM Sweden See on map Links Website Opens in new window Total cost No data Participants (6) Sort alphabetically Sort by EU Contribution Expand all Collapse all DEPARTMENT OF IMMUNOLOGY, CHILDRENS' MEMORIAL HEALTH INSTITUTE Poland EU contribution No data Address AL. DZIECI POLSKICH 20 WARSAW See on map Links Website Opens in new window Total cost No data INSTITUT NATIONAL DE LA SANTÉ ET DE LA RECHERCHE MÉDICALE France EU contribution No data Address 101 RUE DE TOLBIAC PARIS See on map Total cost No data OXFORD RADCLIFFE HOSPITALS NHS TRUST United Kingdom EU contribution No data Address Headley Way OXFORD See on map Total cost No data UNIVERSITY COLLEGE LONDON United Kingdom EU contribution No data Address GOWER STREET LONDON See on map Links Website Opens in new window Total cost No data UNIVERSITY OF BRESCIA Italy EU contribution No data Address Piazza del Mercato 15 BRESCIA See on map Links Website Opens in new window Total cost No data UNIVERSITY OF FREIBURG Germany EU contribution No data Address Hugstetterstr.55 FREIBURG See on map Links Website Opens in new window Total cost No data
