B1 German National Registry for Primary Immunodeficiencies (PID) (Support Code: 01GM1517C)


PRINCIPAL INVESTIGATOR
AND CO-INVESTIGATORS
OF THE SUBPROJECT

Bild von Prof. Dr. med. Bodo Grimbacher

Bodo Grimbacher

Bodo Grimbacher, Univ.-Prof. Dr. med.
Scientific Director, CCI
MEDICAL CENTER – UNIVERSITY OF FREIBURG
Center for Chronic Immunodeficiency
at Center for Translational Cell Research
Breisacher Str. 115
79106 Freiburg
Phone: +49 761 270-77731
Fax: +49 761 270-77744
E-Mail: bodo.grimbacher@uniklinik-freiburg.de

Gerhard Kindle

Gerhard Kindle, Dr. med. Dipl. Inf.
MEDICAL CENTER – UNIVERSITY OF FREIBURG
Center for Chronic Immunodeficiency
at Center for Translational Cell Research
Clinical Research Unit (CRU)
Breisacher Str. 115
79106 Freiburg
Phone: +49 761 270-36961
Fax: +49 761 270-9636960
E-Mail: gerhard.kindle@uniklinik-freiburg.de


TITLE OF SUBPROJECT

German National Registry for Primary Immunodeficiencies (PID)


CONDITION/TOPIC

Primary Immunodeficiencies


OBJECTIVE(S)

Establishing a national platform for PID

  1. To increase the knowledge on the epidemiology of PID in Germany
  2. To compare treatment regimes between medical centres
  3. To analyse the effects of different therapies on, e.g., quality of life
  4. To facilitate prospective observational studies or clinical trials (e.g. diagnostic trials, evaluation of novel treatment strategies)

SUMMARY

The National PID Registry is an epidemiological patient registry with clinical and genetic information on PID patients. Its aim is to recruit all cases attended at the major PID centres in Germany. The Registry was set up within the current funding period of the PID-NET project (2009-2012). By January 13, 2011, data had been entered on a total of 1,061 patients from 14 medical centres. The total expected number of PID patients in Germany is at least 4,000. We have identified 40 departments at various academic medical centres that take care of PID patients. Supposedly, most PID patients are referred to these specialist centres at least for diagnosis and annual checks. However, the long-term aim will be to also recruit patients from regional hospitals and doctors in private office to reach a high level of completeness and a reliable source for epidemiological analysis. The intended recruitment rate is at least 1,500 patients during the current funding period. In the second funding period, we aim at recruiting at least another 1,000 patients. The basic aim of the National PID Registry is to collect data on the epidemiology of PID, such as prevalence, incidence, consanguinity, age at onset of symptoms and diagnosis. To collect this data, we have defined a mandatory core dataset that consists of 15 items. In addition, we collect data on the course of disease (patient-reported outcomes, infections and concomitant diseases), therapy and immunological lab data. This data serves as a basis for outcome-related research questions and to generate research hypotheses that can be further tested in dedicated (clinical) studies. Most of the departments that have signed up so far do not have the capacities to enter the data themselves, so our data entry clerk enters the data on site. In order to improve data completeness, we are distributing patient and physician questionnaires that cover those data items that are usually not contained in regular patient files.