International Severe Asthma Registry (ISAR) (United Kingdom)

Summary

Coordinating Country

United Kingdom

Region

Argentina

Australia

Belgium

Brazil

Bulgaria

Canada

Colombia

Denmark

Ecuador

Estonia

France

Greece

India

Ireland

Italy

Japan

Korea, Republic of (South Korea)

Kuwait

Mexico

Norway

Poland

Portugal

Saudi Arabia

Singapore

Spain

Taiwan

United Arab Emirates

United Kingdom

United States

- Argentina (n = 251),
- Australia (n = 850),
- Belgium (n = 762),
- Brazil (n = 626),
- Bulgaria (n = 397),
- Canada (n = 605),
- Colombia (n = 569),
- Denmark (n = 1,374),
- Ecuador (N/A)
- Estonian (n = 31),
- France (n = 68),
- Greece (n = 212),
- India (n = 600),
- Ireland (n = 100),
- Italy (n = 2,904),
- Japan (n = 258),
- Kuwait (n = 515),
- Mexico (n = 679),
- Norway (n = 100),
- Poland (n = 141),
- Portugal (n = 141),
- Saudi Arabia (n = 449),
- Singapore (n = 203),
- South Korea (n = 297),
- Spain (n = 1,198),
- Taiwan (n = 349),
- United Arab Emirates (n = 311),
- United Kingdom (n = 1,117),
- United States (n = 19,049).
(29 countries worldwide; data as of November 2024.)

Brief Database Description

The International Severe Asthma Registry (ISAR) is the first global severe asthma registry; a joint initiative where national registries (both newly created and pre-existing) retain ownership of their own data but open their borders and share data with ISAR for ethically approved research. (Severe asthma is defined by ISAR as those patients on Global Initiative for Asthma Step 5, or those with uncontrolled asthma on Global Initiative for Asthma Step 4.)

By collecting anonymised, high-quality patient-level data via a standardised core set of variables from countries all over the world, ISAR is able to fill the need for a longitudinal, real-life, globally interoperable severe asthma registry.

Collated by the ISAR network of respiratory and database experts via the Delphi iterative decision making process, ISAR captures the following information:
-Demographics,
-Medical History,
-Comorbidities,
-Diagnostics,
-Hospital Resource Utilization,
-Biomarkers (Blood and Sputum Eosinophils, IgE, FeNO),
-Asthma Medication,
-Allergy Tests,
-Asthma Control (GINA Assessment for asthma control),
-Adherence and Clinical Management Plan.

ISAR also collects safety-related data across three main events: Cancer, Serious Infections and Anaphylaxis and medication effectiveness data across ten OCS related comorbidities (Osteoporosis, Diabetes, Renal Failure, Anxiety, Depression, Peptic Ulcer, Cataract, Glaucoma, Pneumonia, Cardiovascular Diseases, Obstructive Sleep Apnoea), as well as OCS/ICS doses and reasons for switching from/to/between biologics.

The ISAR initiative is conducted by Optimum Patient Care (OPC) Global Limited, with scientific oversight from the ISAR Core Steering Committee (ISC), academic support from the Respiratory Effectiveness Group (REG), ethical governance from the Anonymized Data Ethics & Protocol Committee (ADEPT), and co-funded by OPC Global and AstraZeneca since May 2017.

Bolstered by a collaborative organizational structure, the network of database and clinical experts, and its principle of inclusivity/openness with regards to research, ISAR provides the statistical power and opportunity to better understand severe asthma epidemiology across countries and regions and answer important research questions while ensuring the scientific integrity and clinical applicability of the database and its research. Ultimately, ISAR offers an unique opportunity to implement existing knowledge to generate new knowledge by identifying the unknown; thus, driving new research in the severe asthma disease area.

Database Type

Registry

[ISAR is a longitudinal, real-life, globally interoperable severe asthma registry. Patient-level data provide the opportunity to conduct biostatistical multivariate analyses to investigate the potential relationship between outcome and risk factors, and provide level of risk for a patient rather than for a group (e.g., age group, country) to track patient progress longitudinally over the course of time and to analyze response to treatment and changes in medical management. ISAR’s centralized analysis model also removes potential for discrepancies in the methodology of data analyses between countries, provides the ability to dig further into individual country data (as part of a multinational dataset), and is a costeffective and time-efficient approach. Data collection is standardized across all ISAR-contributing countries, using a core set of variables which all participating countries have agreed to collect. Arriving at the final list of variables to collect involved in-depth analysis of key variables collected by other registries and formulation of a comprehensive list of those variables (747 in total) and a modified Delphi, consensus-driven approach to reduce this list to 95 core variables, all overseen by a panel of 25+7 experts from 16+ countries in the field of severe asthma.)]

Database Source

EHR/EMR

EDC systems improve efficiency, reduce workload, time & cost and enhance data quality.

Frequency of Data Collection

Ongoing

Frequency of Data Update

Ongoing

Years Covered

2017 - Present

Population Type

General Population

(Those with severe asthma)

Patient Type

Outpatient/Non-Institutionalized

Other

(Mostly outpatient, though)

Date of Last Update

Ongoing

The International Severe Asthma Registry is updated on an ongoing basis.
This profile was developed for the B.R.I.D.G.E. TO DATA site on August 25, 2025.

Population Dynamics

Database Population Size

<200,000

(Over 34,000 patients were recruited from 29 countries as of November 2024)

Active Population Size

<200,000

(Over 34,000 patients were recruited from 29 countries as of November 2024)

Annual Change in Population

<1% approximately

Sample Weights - Extrapolation Factors

N/A

(Not applicable)

Final Population Size

N/A

(Not applicable as data are still being collected)

Demographic Data

Age of Patients at Data Collection

Yes

Approximate Percentage of Participants <18 years and those >65 years

18 - 25 years = >65%

The mean (SD) age at onset was 30.7 years; 77.5% of patients developed asthma after the age of 12 years, and 34.4% developed it after the age of 40 years.

Gender Data

Yes

Percentage of Males/Females

Yes

Ethnicity / Race Data

Yes

(White, Asian, African, Mixed, Other, Unknown)

Geographic Location

(29 countries worldwide; data as of November 2024.)

Date of Birth Recorded

Yes

Death Recorded

Neither date nor age at death is recorded

Availability of death certificate / autopsy information

N/A

(Not applicable)

Other Demographic Data

Yes

Collated by the ISAR network of respiratory and database experts via the Delphi iterative decision making process, ISAR captures the following information:
-Demographics,
-Medical History (including obesity),
-Comorbidities,
-Diagnostics,
-Hospital Resource Utilization,
-Biomarkers (Blood and Sputum Eosinophils, IgE, FeNO),
-Occupation
-Quality of Life/Depression & Anxiety (via Questionnaire - optional),
-Allergy Tests,
-Asthma Control (GINA Assessment for asthma control),
-Adherence and Clinical Management Plan.

Physician & Practioner Info

Physician ID

Physician Specialty

Pharmacy ID

Diagnoses/Signs & Symptoms

Diagnosis Data

Yes

Information may also include information on pediatric severe asthma and anaphylaxis

Diagnoses Coded

N/A

(Not applicable - no coding is done)

Diagnoses: Date Parameters

2017 - Present

Diagnoses: Maximum Number of Codes Allowed

Unlimited

Physical Examination Findings

Yes

Includes information on BMI, weight, obesity, etc.

Birth Defect Data

N/A

(This information is not available to us; please contact the registry personnel)

Cancer Data

Yes

Information is often available on malignancies

Infectious Disease Data

Yes

Information is often included on severe infections

Environmental Exposures

Yes

(Pollution, for example)

Behavioral Data Elements

Yes

Information is available on smoking status (current smoker, ex-smoker, never smoked)

Procedures

Procedure Data

Only clinical history and information on medications is recorded - not procedures

Procedures Coded

N/A

(Not applicable)

Number of Procedures Coded

N/A

(Not applicable)

Procedure Date Parameters

N/A

(Not applicable)

Laboratory Information

Yes

This includes blood sputum and lung function

Drug Information

Drug Data

Yes

Information is available on:
- Asthma Medication
- Effectiveness: Exacerbation details, ICS/OCS (oral corticosteroid) dose, Reason for medication switch

Drug Date Parameters

2017 - Present

Drug Regimen & Route

Yes

May include drug form, e.g., tablet

Drug Manufacturer

Yes

Brand names are included

Drug Dosage

Yes

Information on dose is collected

Drug Days Supply

Yes

Dates of administration and frequency is known

Drug Coding System: Maximum Number

Unlimited

Drug Coding System: Primary

N/A

(Not applicable - no coding is done)

Drug Coding System: Other

N/A

(Not applicable)

Drug Generic Name

Yes

Drug Additional Information

N/A

(Not applicable)

Biobanks

Biobank Type

N/A

Human Specimen

N/A

Blood Type

N/A

Biomarkers

N/A

Patient ID

N/A

Number of Samples

N/A

Frequency of Sample Collection

N/A

Pre-diagnostic Sample Collection

N/A

Post-treatment Sample Collection

N/A

Method of Sample Collection

N/A

Age at Sample Collection

N/A

Date of Sample Collection

N/A

Reason for Sample Collection

N/A

Method of Sample Storage

N/A

Length of Sample Storage

N/A

Pathology

N/A

DNA Isolation

N/A

RNA Isolation

N/A

Cell Culture

N/A

Genetic Testing

N/A

Access for Research: Specimens

N/A

Access for Research: Genetic Data

N/A

Access for Research: Epidemiologic Data

N/A

Quality Assurance Procedures

N/A

Family History

N/A

Medical History

N/A

Biobank Linkage

N/A

Genetic-PGx Data

Type of Genetic Database

N/A

Source of Genetic Data

N/A

Specimen Genotyped

N/A

Tissue Form

N/A

Genetic Template

N/A

Gene-Drug Response

N/A

Gene-Disease Relationship

N/A

Gene-Health Outcome Relationship

N/A

Gene-Environment Response

N/A

Method of Imputing Genetic Data

N/A

Genetic Variant Identification

N/A

Genetic Data Level

N/A

Genotyping Method

N/A

Method of Genetic Variant Filtering

N/A

Haplotypes

N/A

Haplogroups

N/A

Variable Number of Tandem Repeats (VNTR)

N/A

Single Nucleotide Polymorphisms (SNPs)

N/A

Variant Type

N/A

Variant Class

N/A

Mutation Indicated

N/A

Position

N/A

Amino Acid Change

N/A

Genotype / Polymorphism

N/A

Allele Frequency

N/A

Linkage Disequilibrium (r²)

N/A

Noncarriers Indicated

N/A

Association Statistics

N/A

Genetic Relatedness Pairing

N/A

Data Sharing: Genetic Data

N/A

Access for Research

N/A

Genetic Data Linkage

N/A

Description of Genetic Data Linkage

N/A

Economic Data

Cost Data

Cost data are not collected

Cost Denomination

N/A

(Not applicable)

Type of Cost Data

N/A

(Not applicable)

Surrogate Cost Data Link

N/A

(Not applicable)

Description of Surrogate Link

N/A

(Not applicable)

Validation & Linkage

Data Validation Against Original Source

Access to Medical Records

No access to medical records; ISAR data are used by pre-agreed researchers.

Linkage to Other Databases

Yes

ISAR has a global reach, partnering with registries
around the world. However, while data are collected globally and consolidated, no direct links to other databases exist.

Brief Description of Linkage Capabilities

No direct links exist to other databases.
NOTE: ISAR is a joint initiative and would not exist without the data provided by local registries. Importantly, local registries retain ownership of their own data, but benefit from ISAR in terms of the analytic power it provides and cross comparisons with data from other countries. ISAR also supports setting up of local registries via provision of a standardized variables list and resource support in assessing data quality and/or an electronic data capturing system. The registry acts as a data custodian, collecting, collating, exploring, and analyzing standardized data provided by local registries. Countries participate by either enabling country data to be provided directly into ISAR or by allowing country data to be used for any research conducted under the ISAR initiative, and approved by ISAR’s governance body.

Administrative Information

Database Contact Data

5 Coles Lane Oakington
Cambridgeshire CB24 3BA
UNITED KINGDOM
Email: isar@optimumpatientcare.org
Phone: +44 123 967855

Website

https://www.isar.opcglobal.org

Alternate Contact

SINGAPORE office:
Phone : +65 3105 1489
Email: isar@optimumpatientcare.org

You may also complete the Contact Us form at https://www.isar.opcglobal.org/contact-us

Source of Database Funding

Private

Pharmaceutical Company

ISAR is co-funded by OPC Global and AstraZeneca since May 2017.
The ISAR initiative is conducted by Optimum Patient Care (OPC) Global Limited, with scientific oversight from the ISAR Core Steering Committee (ISC), academic support from the Respiratory Effectiveness Group (REG), and ethical governance from the Anonymized Data Ethics & Protocol Committee (ADEPT).

Sponsoring Government Agency

N/A

(Not applicable)

Sponsoring Pharmaceutical Manufacturer

Cofunded by OPC Global and AstraZeneca

Database Usage Restrictions

Private Access

The fully developed ISAR EDC system running on the REDCAP Platform is freely available to countries participating with the ISAR registry.

Charge for Database Usage

Countries request a data cut of their own data from the database, but there is not cost.

Data Media Format

PDF Files

SAS / SPSS

Excel / CSV

FLAT files

Company online portal

Text files

All formats are available; countries/sites request their preferred format.

Number of Publications Using Database

>10

References of Studies Using/Describing Database

1. Schleich F, Larenas-Linnemann D, Altraja A, de Llano LP, Kostikas K, Sadatsafavi M, Bourdin A, Pleasants RA, Hew M, Chen W, Jiménez-Maldonado L. Biomarker profile and disease burden associated with intermittent and long-term oral corticosteroid use in patients with severe asthma prior to biologic initiation in real-life (STAR). World Allergy Organization Journal. 2025 Jul 1;18(7):101066.

2. Côté A, Beaulé R, Boulay MÈ, Guertin J, Boulet LP, Godbout K, Price D. Poor Agreement Among Asthma Specialists on the Choice and Timing of Initiation of a Biologic Treatment for Severe Asthma Patients. J Allergy Clin Immunol Pract. 2025 Jun;13(6):1358-1366.e9.

3. Sadatsafavi M, Tran TN, Scelo G, Tsai MJ, Busby J, Emmanuel B, Heaney LG, Jenkins C, Hoyte F, Canonica GW, Katial R, Heffler E, Wang E, Puggioni F, Wechsler ME, Ardusso LRF, Máspero J, Sivori M, Emmas C, Menzies-Gow AN, Stjepanovic N, Bosnic-Anticevich SZ, Cochrane B, Denton E, Gibson PG, Hew M, Middleton PG, Peters MJ, Brusselle GG, Louis R, Schleich F, Christoff GC, Popov TA, Bergeron C, Bhutani M, Chapman KR, Côté A, Couillard S, Dorscheid DR, Jiménez-Maldonado L, Solarte I, Torres-Duque CA, Hansen S, Porsbjerg CM, Ulrik CS, Altraja A, Bourdin A, Exarchos KP, Gogali A, Kostikas K, Makris MP, Papaioannou AI, Mitchell PD, Iwanaga T, Nagano T, Tohda Y, Al-Ahmad MS, Larenas-Linnemann D, Aarli BB, Kuna P, Chaves Loureiro C, Al-Lehebi R, Bulkhi AA, Chen W, Juang YR, Koh MS, Liu A, Rhee CK, Cosio BG, Perez-de-Llano L, Perng DW, Sheu CC, Wang HC, Mahboub B, Salameh L, Jackson DJ, Patel PH, Pfeffer PE, Lugogo N, Pleasants RA, Beastall A, Bulathsinhala L, Carter V, Eleangovan N, Fletton K, Townend J, Murray RB, Price DB. Prevention of Cardiovascular and Other Systemic Adverse Outcomes in Patients with Asthma Treated with Biologics. Am J Respir Crit Care Med. 2025 May 18. Epub ahead of print.

4. Chen W, Tran TN, Townend J, Christoff GC, Tsai MJ, Altraja A, Cochrane B, Cosio BG, Sivori M, Murray RB, Makris MP, Scelo G, Bulathsinhala L, Ardusso LRF, Franchi ME, Máspero J, Saldarini F, Stok AM, Tomaszuk AG, Yañez A, Emmanuel B, Emmas C, Kostikas K, Menzies-Gow AN, Stjepanovic N, Bosnic-Anticevich SZ, Denton E, Gibson PG, Hew M, Jenkins C, Middleton PG, Peters MJ, Upham JW, Brusselle GG, Louis R, Schleich F, Pitrez PM, Popov TA, Bergeron C, Bhutani M, Chapman KR, Côté A, Couillard S, Dorscheid DR, Lougheed MD, Sadatsafavi M, Celis-Preciado CA, Jiménez-Maldonado L, Rodríguez-Cáceres B, Cano Rosales DJ, Solarte I, Torres-Duque CA, Hansen S, Porsbjerg CM, Ulrik CS, Bourdin A, Bakakos P, Exarchos KP, Gogali A, Ladias AA, Papadopoulos NG, Papaioannou AI, Costello RW, Cushen B, Mitchell PD, Canonica GW, Heffler E, Puggioni F, Iwanaga T, Nagano T, Tohda Y, Al-Ahmad MS, Larenas-Linnemann D, Aarli BB, Lehmann S, Kuna P, Ferreira JA, Fonseca JA, Loureiro CC, Al-Lehebi R, Bulkhi AA, Juang YR, Koh MS, Liu A, Rhee CK, Perez-de-Llano L, Fu PK, Perng DW, Sheu CC, Wang HC, Mahboub B, Salameh L, Busby J, Heaney LG, Jackson DJ, Patel PH, Pfeffer PE, Hoyte F, Katial RK, Lugogo N, Pleasants RA, Wang E, Wechsler ME, Beastall A, Carter V, Eleangovan N, Fletton K, Price DB; ISAR SOLAR I Working Group. Impact of Biologics Initiation on Oral Corticosteroid Use in the International Severe Asthma Registry and the Optimum Patient Care Research Database: A Pooled Analysis of Real-World Data. J Allergy Clin Immunol Pract. 2025 Apr 26:S2213-2198(25)00390-3. doi: 10.1016/j.jaip.2025.04.032. Epub ahead of print.

5. Larenas-Linnemann D, Rhee CK, Altraja A, Busby J, Tran TN, Wang E, Popov TA, Mitchell PD, Pfeffer PE, Pleasants RA, Katial R, Koh MS, Bourdin A, Schleich F, Máspero J, Hew M, Peters MJ, Jackson DJ, Christoff GC, Perez-de-Llano L, Cherrez-Ojeda I, Fonseca JA, Costello RW, Torres-Duque CA, Kuna P, Menzies-Gow AN, Stjepanovic N, Gibson PG, Pitrez PM, Bergeron C, Porsbjerg CM, Taillé C, Taube C, Papadopoulos NG, Papaioannou AI, Salvi S, Canonica GW, Heffler E, Iwanaga T, Al-Ahmad MS, Lehmann S, Al-Lehebi R, Cosio BG, Perng DW, Mahboub B, Heaney LG, Patel PH, Lugogo N, Wechsler ME, Bulathsinhala L, Carter V, Fletton K, Neil DL, Scelo G, Price DB. International Severe Asthma Registry (ISAR): 2017-2024 Status and Progress Update. Tuberc Respir Dis (Seoul). 2025 Apr;88(2):193-215.

6. Tran TN, Chen S, Emmanuel B, Altraja A, Bourdin A, Sheu CC, Tsai MJ, Hoyte FCL, Quinton A, Cook B, Bulathsinhala L, Henley W, Goh CYY, Liu Y, Ariti C, Carter V, Price DB; CLEAR Study Working Group. Real-World Biologic Use Patterns in Severe Asthma, 2015-2021: The CLEAR Study. Pragmat Obs Res. 2025 Mar 18;16:51-66.

7. Le TT, Price DB, Erhard C, Cook B, Quinton A, Katial R, Christoff GC, Perez-de-Llano L, Altraja A, Bergeron C, Bourdin A. Disease burden and access to biologic therapy in patients with severe asthma, 2017–2022: an analysis of the international severe asthma registry. Journal of Asthma and Allergy. 2024 Dec 31:1055-69.

8. Perez-de-Llano L, Scelo G, Tran TN, Le TT, Fagerås M, Cosio BG, Peters M, Pfeffer PE, Al-Ahmad M, Al-Lehebi RO, Altraja A, Bergeron C, Bjermer LH, Bjerrum AS, Bulathsinhala L, Busby J, Cano Rosales DJ, Canonica GW, Carter VA, Charriot J, Christoff GC, Denton EJ, Dorscheid DR, Fernandez Sanchez MJ, Fonseca JA, Gibson PG, Goh CYY, Heaney LG, Heffler E, Hew M, Iwanaga T, Katial R, Koh MS, Kuna P, Larenas-Linnemann DES, Lehtimäki L, Mahboub B, Martin N, Matsumoto H, Menzies-Gow AN, Papadopoulos NG, Popov TA, Porsbjerg CM, Patel P, Rhee CK, Sadatsafavi M, Taillé C, Torres-Duque CA, Tsai MJ, Ulrik CS, Upham JW, von Bülow A, Wang E, Wechsler ME, Price DB. Exploring Definitions and Predictors of Severe Asthma Clinical Remission after Biologic Treatment in Adults. Am J Respir Crit Care Med. 2024 Oct 1;210(7):869-880.

9. Denton E, Hew M, Peters MJ, Upham JW, Bulathsinhala L, Tran TN, Martin N, Bergeron C, Al-Ahmad M, Altraja A, Larenas-Linnemann D, Murray R, Celis-Preciado CA, Al-Lehebi R, Belhassen M, Bhutani M, Bosnic-Anticevich SZ, Bourdin A, Brusselle GG, Busby J, Canonica GW, Heffler E, Chapman KR, Charriot J, Christoff GC, Chung LP, Cosio BG, Côté A, Costello RW, Cushen B, Fingleton J, Fonseca JA, Gibson PG, Heaney LG, Huang EW, Iwanaga T, Jackson DJ, Koh MS, Lehtimäki L, Máspero J, Mahboub B, Menzies-Gow AN, Mitchell PD, Papadopoulos NG, Papaioannou AI, Perez-de-Llano L, Perng DW, Pfeffer PE, Popov TA, Porsbjerg CM, Rhee CK, Roche N, Sadatsafavi M, Salvi S, Schmid JM, Sheu CC, Sirena C, Torres-Duque CA, Salameh L, Patel PH, Ulrik CS, Wang E, Wechsler ME, Price DB; ISAR LUMINANT Working Group. Real-world biologics response and super-response in the International Severe Asthma Registry cohort. Allergy. 2024 Oct;79(10):2700-2716.

10. Scelo G, Tran TN, Le TT, Fagerås M, Dorscheid D, Busby J, Al-Ahmad M, Al-Lehebi R, Altraja A, Beastall A, Bergeron C, Bjermer L, Bjerrum AS, Cano-Rosales DJ, Canonica GW, Carter V, Charriot J, Christoff GC, Cosio BG, Denton E, Fernandez-Sanchez MJ, Fonseca JA, Gibson PG, Goh C, Heaney LG, Heffler E, Hew M, Iwanaga T, Katial R, Koh MS, Kuna P, Larenas-Linnemann D, Lehtimäki L, Mahboub B, Martin N, Matsumoto H, Menzies-Gow AN, Papadopoulos NG, Patel P, Perez-De-Llano L, Peters M, Pfeffer PE, Popov TA, Porsbjerg CM, Rhee CK, Sadatsafavi M, Taillé C, Torres-Duque CA, Tsai MJ, Ulrik CS, Upham JW, von Bülow A, Wang E, Wechsler ME, Price DB. Exploring Definitions and Predictors of Response to Biologics for Severe Asthma. J Allergy Clin Immunol Pract. 2024 Sep;12(9):2347-2361.

Database Contact

Database Contact Data

5 Coles Lane Oakington
Cambridgeshire CB24 3BA
UNITED KINGDOM
Email: isar@optimumpatientcare.org
Phone: +44 123 967855

Alternate Contact

SINGAPORE office:
Phone : +65 3105 1489
Email: isar@optimumpatientcare.org

You may also complete the Contact Us form at https://www.isar.opcglobal.org/contact-us

Literature References

References of Studies Using/Describing Database