Clinical and Laboratory Online Patient- and Research Database for Primary Immunodeficiencies in Switzerland

Overview

A Swiss national, multi-centre, online patient and research database will be created, using the existing ESID database server system. This database contains disease-specific data from patients with primary (inborn) immunodeficiency diseases (PID).

Study Type

  • Study Type: Observational
  • Study Design
  • Study Primary Completion Date: December 2018

Detailed Description

The project aims to compile clinical and laboratory data of patients with primary immunodeficiencies (PID) in order to improve diagnosis, classification, prognosis and therapy. The online technology offers features not available in former databases such as access control,security functionality, and maintenance of data integrity during transactions and system errors, online back up, online optimization, scalability and online SQL-queries as well as a long term documentation of patients. Furthermore the database can be used for the submission and storage of molecular diagnostic results and thus allow the compilation of genotype and phenotype observations, which is of essential and immediate use for the patient himself and patient care. An attending physician may gain information on similar cases of a rare PID disease in Switzerland and European countries and use these insights for therapy. In addition, it will be possible to obtain an insight on side effects. Thus, the system also meets the requirements of an optimal platform for Phase IV studies of post-licensing drug surveillance-programs.

Arms, Groups and Cohorts

  • Primary Immunodeficiency Disease
    • Patients with primary Immunodeficiency disease (PID)

Participating in This Clinical Trial

Inclusion Criteria

  • Primary Immunodeficiency Disease (PID) Exclusion Criteria:

  • None

Gender Eligibility: All

Minimum Age: N/A

Maximum Age: N/A

Are Healthy Volunteers Accepted: No

Investigator Details

  • Lead Sponsor
    • University of Zurich
  • Collaborator
    • University of Basel
  • Provider of Information About this Clinical Study
    • Sponsor
  • Overall Official(s)
    • Arthur Helbling, Prof., Principal Investigator, University Bern, Inselspital
    • Christoph Hess, Prof., Principal Investigator, University Basel, University Hospital
    • Ayse H Ozsahin, Prof., Principal Investigator, University Geneva, University Hospital
    • Francois Spertini, Prof., Principal Investigator, University Lausanne, University Hospital
    • Hugo Ubieto, MD, Principal Investigator, Children’s Hospital of Eastern Switzerland, St. Gallen
    • Reinhard A Seger, Prof., Principal Investigator, University Zürich, University Children’s Hospital

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