5 April 2016

National Quality Registry for Primary Immunodeficiency (PIDcare)

  • Registry Manager: Jönköping County Council
  • Registry Centre - affiliation: Registry Centre South East, RCSO
  • Start year: 2012
  • Classifications used: ICD-10, KVÅ, ATC
  • This registry contains data on: Pharmaceuticals, Diagnoses, Interventions, Primary Care, Inpatient Care, Specialized Outpatient Care, PROM or other patient-reported health effects, Risk Factors, Follow-up Data 6-11 months as well as Follow-up Data 12 months or later after the case is registered in the registry

Description of registry

PIDcare is a quality registry that strives to secure and improve the quality of care for patients with primary immunodeficiency and/or increased susceptibility to infection and autoimmune diseases. It is also created in order to increase the awareness of immunodeficiency disorders.

A web-based portal allow the patients to register their own data concerning self reported health, days with various symptoms, sick days, hospital days, immunoglobulin infusions, use of antibiotics and vaccinations.

Population

Patients with primary and secondary immunodeficiency disorders, though not patients with HIV, who are registered in a separate registry.

Ages in the registry

All ages.

Total volume of registry

As of 31 December 2015, 1432 patients, 8868 samplings and 81982 test results.

Volume over the past operating year

From 1 January 2015 to 31 December 2015, 426 patients, 1399 samplings and 11828 test results.

Note: The variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.

Category: Infection

Certification level: 3

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