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:

Country	Registry	Organisation	Link
Argentina	Argentinian Severe Asthma Registry	Fundacion CIDEA, Buenos Aires	n/a
Australia and New Zealand	Australasian Severe Asthma Network Registry (ASAN), previously Severe Asthma Web-based Database (SAWD)	Australasian Severe Asthma Network (ASAN)	View
Belgium	Belgian Severe Asthma Registry (BSAR)	Belgian Respiratory Society (BeRS)	View
Brazil	Brazilian Severe Asthma Group (BraSA Group)	Hospital Moinhos de Vento	n/a
Bulgaria	Bulgarian Severe Asthma Registry (BULSAR)	Medical University, Sofia	n/a
Canada	Canada Severe Asthma Registry (CSAR)	Vancouver General Hospital	View
Colombia	Colombian Severe Asthma Registry	Fundación Neumológica Colombiana	n/a
Denmark	Danish Severe Asthma Registry (DSAR)	Copenhagen University Hospital, Bispebjerg	n/a
Estonia	Estonian Severe Asthma Registry – under development	University of Tartu and Lung Clinic, Tartu University Hospital	n/a
Germany	German Asthma Network (GAN)	German Asthma Net	View
Germany	University Medical Center Essen-Ruhrlandklinik	Essen University Hospital	View
Greece	Greek Severe Asthma Registry	Attikon University Hospital	n/a
Finland	Finnish Asthma Registry	Tampere University Hospital	n/a
France	Recherche sur les Asthmes Sévères (RAMSES)	Société de Pneumologie & Publique-Hôpitaux de Paris	View
Iceland	Iceland (Asthmabio)	National University Hospital of Iceland, Reykjavik	n/a
India	Pulmocare Research and Education [PURE] Foundation	Respiratory Research Network (RRN)	View
Ireland	Irish Severe Asthma Registry	Beaumont Hospital, Dublin	n/a
Ireland	INhaler Compliance Assessment for Symptomatic UNcontrolled Asthma (INCA SUN)	Royal College of Surgeons and Trinity College Dublin	View
Italy	Severe/Uncontrolled Asthma Registry (SUA)	Italian Severe Asthma Network (SANI)	View
Japan	Kinki-Hokuriku Airway disease Conference (KiHAC)	Kinki-Hokuriku Airway Disease Study Group	View
Kuwait	Kuwaiti Severe Asthma Registry	Kuwait University, Al-Rashed Allergy Center	n/a
Mexico	Mexican Severe Asthma Registry	Hospital Médica Sur, Ciudad de México	n/a
Netherlands	Registry of Adult Patients with Severe Asthma for Optimal Disease Management (RAPSODI)	RAPSODI Foundation	View
Norway	Norwegian Severe Asthma Registry	University of Bergen, Bergen	n/a
Poland	Polish Severe Asthma Registry	Asthma and Allergy Medical University of Łódź	n/a
Portugal	Registo de Asma Grave Portugal (RAG)	Rede de Especialistas em Asma Grave (REAG)	View
Russia	Russian Severe Asthma Registry (RSAR)	Russian Respiratory Society	n/a
Saudi Arabia	Saudi Arabian Severe Asthma Registry	King Fahad Medical City, Riyadh	n/a
Singapore	Singapore Severe Asthma Registry (S-SAR)	The Academic Respiratory Initiative for Pulmonary Health (TARIPH)	n/a
South Korea	South Korean Severe Asthma Registry	Seoul St. Mary’s Hospital, Seoul	n/a
Spain	Spanish Guideline on the Management of Asthma Database (GEMA-Data)	GEMA Executive Committee	n/a
Sweden	Swedish Severe Asthma Registry – under development	Skåne University Hospital, Lund University, Lund	n/a
Taiwan	Taiwanese Severe Asthma Registry	Taipei Veterans General Hospital	n/a
United Arab Emirates	United Arab Emirates Severe Asthma Registry	Rashid Hospital, Dubai Health Authority, Dubai	n/a
United Kingdom	UK Severe Asthma Network and National Registry, previously British Thoracic Society Severe Asthma Registry	University of Belfast	n/a
United States of America	CHRONICLE	AstraZeneca MedX	View
United States of America	National Jewish Health (NJH)	Board of Directors, Officers and Administration, and Council of National Trustees	View

Linking Severe Asthma Registries to Primary Care Electronic Health Records

United Kingdom

The Optimum Patient Care Research Database (OPCRD) is a bespoke database with focus on patient-reported outcomes that contains anonymous data from over 800 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.