The ISAR initiative will provide support for data collection across all participating countries. The fully developed ISAR EDC system running on the OpenClinica Platform is freely available to countries participating with the ISAR registry.
The ISAR registry includes the following data areas:
- Patient details
- Lung function
- Allergen testing
- Asthma Control
- Asthma Medication
- Safety: Cancer, Serious infection
- Treatment Management Plan
Exacerbation details, ICS/OCS dose, Reason for medication switch
Current National Registries
Countries with existing and well established registries will be supported with extractions of the required data from their home registries for ISAR.
The existing registries include:
|UK||Severe Asthma Registry||UK Severe Asthma Network and National Registry||View|
|Germany||German Asthma Net (GAN)||German Asthma Net||View|
|Italy||Severe/Uncontrolled Asthma Registry (SUA)||Italian Severe Asthma Network(SANI)||View|
|Australia||SAWD Severe Asthma Web based Database||Australasian Severe Asthma Network(ASAN)||View|
Linking Severe Asthma Registries to Primary Care Electronic Health Records
The Optimum Patient Care Research Database (OPCRD) is a bespoke database with focus on patient-reported outcomes that contains anonymous data from over 600 UK general practices across England, Scotland, Wales, and Northern Ireland. The database contains both longitudinal medical records and, for approximately 10% of patients with asthma and COPD, the results of patient-completed questionnaires. Hashed NHS identifiers can be obtained for all patients in this database during the anonymised data extraction process. The ability to link severe asthma registry data with data in primary care databases such as the OPCRD, will be an added advantage and allow in-depth characterisation of:
- Healthcare resource use
- Medical history and comorbidities
- Medication use, including adherence and persistence
To learn more about the OPCRD please click here.