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Note: This record shows only 22 elements of the WHO Trial Registration Data Set. To view changes that have been made to the source record, or for additional information about this trial, click on the URL below to go to the source record in the primary register.
Register: German Clinical Trials Register
Last refreshed on: 8 April 2024
Main ID:  DRKS00007776
Date of registration: 05/02/2015
Prospective Registration: No
Primary sponsor: European Society for Immunodeficiencies (ESID)c/o Kenes Education B.V.
Public title: Clinical and Laboratory Online Patient- and Research Registry for Primary Immunodeficiencies of the European Society for Immunodeficiencies (ESID)
Scientific title: Clinical and Laboratory Online Patient- and Research Registry for Primary Immunodeficiencies of the European Society for Immunodeficiencies (ESID) - ESID Registry
Date of first enrolment: 11/12/2014
Target sample size: 30000
Recruitment status: Recruiting
URL:  http://drks.de/search/en/trial/DRKS00007776
Study type:  observational
Study design:  Allocation: ; Masking: ; Control: ; Assignment: ; Study design purpose: other  
Phase: 
Countries of recruitment
Austria Belgium Croatia Czechia Egypt France Germany Hungary
Iran Ireland Israel Italy Netherlands Poland Slovakia Slovenia
Spain Switzerland United Kingdom
Contacts
Name: Gerhard    Kindle
Address:  Breisacher Str. 115 79106 Freiburg Germany
Telephone: 0761 270 36961
Email: esid-registry@uniklinik-freiburg.de
Affiliation:  Institut für Immundefizienz (CCI) Universitätsklinikum Freiburg
Name: Gerhard    Kindle
Address:  Breisacher Str. 115 79106 Freiburg Germany
Telephone: 0761 270 36961
Email: esid-registry@uniklinik-freiburg.de
Affiliation:  Institut für Immundefizienz (im CCI) Universitätsklinikum Freiburg
Key inclusion & exclusion criteria
Inclusion criteria: Diagnosis of a primary immunodeficiency
Exclusion criteria: Diagnosis of a secondary immunodeficiency

Age minimum: None
Age maximum: None
Gender: All
Health Condition(s) or Problem(s) studied
Common variable immunodeficiency
Immunodeficiency associated with other major defects
Combined immunodeficiencies
Immunodeficiency with predominantly antibody defects

D84
D80
D81
D82
D83
Other immunodeficiencies
Intervention(s)
Group 1: Baseline documentation: Age, sex, familial cases, first symptoms, diagnosis, haemtopoietic stem cell transplantation (HSCT), immunoglobulin replacement (Ig replacement), lab values, clinical features; Yearly follow-up: living status, therapy status (HSCT, Ig replacement), changes to diagnosis, lab values, clinical features
Primary Outcome(s)
Determine the epidemiology of primary immunodeficiencies (PID)
Secondary Outcome(s)
Correlation of clinical features, life expectancy, complications, medication effects
Secondary ID(s)
Source(s) of Monetary Support
European Society for Immunodeficiencies (ESID)c/o Kenes Education B.V.
Secondary Sponsor(s)
Ethics review
Status: Approved
Approval date: 11/12/2014
Contact:
ekfr.mpg@uniklinik-freiburg.de
Ethik-Kommission der Albert-Ludwigs-Universität Freiburg
+49-761-27072600
ekfr.mpg@uniklinik-freiburg.de
Results
Results available:
Date Posted:
Date Completed:
URL: http://drks.de/search/en/trial/DRKS00007776#studyResults
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