Advancing the Patient Experience in Chronic Obstructive Pulmonary Disease (COPD) Registry

First published 01/02/2024

Last updated 17/10/2025

Data source

Human

Disease registry

Other

Primary care medical records

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The data source contains the following information

Disease information Does the data source collect information with a focus on a specific disease? This might be a patient registry or other similar initiatives.: Yes

Disease details: Chronic obstructive pulmonary disease

Disease details, other: Free text CT scan and spirometry data for chronic obstructive pulmonary disease.

Rare diseases Are rare diseases captured? In the European Union a rare disease is one that affects no more than 5 people in 10,000.: No

Pregnancy and/or neonates Does the data source collect information on pregnant women and/or neonatal subpopulation (under 28 days of age)?: No

Hospital admission and/or discharge: No

ICU admission Is information on intensive care unit admission available?: No

Cause of death: Not Captured

Prescriptions of medicines: Captured

Prescriptions vocabulary: RxNorm

Dispensing of medicines: Captured

Dispensing vocabulary: RxNorm

Advanced therapy medicinal products (ATMP) Is information on advanced therapy medicinal products included? A medicinal product for human use that is either a gene therapy medicinal product, a somatic cell therapy product or a tissue engineered products as defined in Regulation (EC) No 1394/2007 [Reg (EC) No 1394/2007 Art 1(1)].: Yes

Contraception Is information on the use of any type of contraception (oral, injectable, devices etc.) available?: No

Indication for use Does the data source capture information on the therapeutic indication for the use of medicinal products?: Captured

Indication vocabulary: CPT

SNOMED CT

Medical devices Is information on medicinal devices (e.g., pens, syringes, inhalers) available?: No

Administration of vaccines: Yes

Procedures Does the data source capture information on procedures (e.g., diagnostic tests, therapeutic, surgical interventions)?: Captured

Procedures vocabulary: CPT

Other

SNOMED CT

Procedures vocabulary, other: CPT4

Clinical measurements Is information on clinical measurements (e.g., BMI, blood pressure, height) available?: Yes

Healthcare provider Is information on the person providing healthcare (e.g., physician, pharmacist, specialist) available? The healthcare provider refers to individual health professionals or a health facility organisation licensed to provide health care diagnosis and treatment services including medication, surgery and medical devices.: No

Genetic data Are data related to genotyping, genome sequencing available?: Not Captured

Biomarker data Does the data source capture biomarker information? The term “biomarker” refers to a broad subcategory of medical signs ( objective indications of medical state observed from outside the patient), which can be measured accurately and reproducibly. For example, haematological assays, infectious disease markers or metabolomic biomarkers.: Not Captured

Patient-reported outcomes Is information on patient-reported outcomes (e.g., quality of life) available?: Yes

Patient-generated data Is patient-generated information (e.g., from wearable devices) available?: Yes

Units of healthcare utilisation Are units of healthcare utilisation (e.g., number of visits to GP per year, number of hospital days) available or can they be derived? Units of healthcare utilisation refer to the quantification of the use of services for the purpose of preventing or curing health problems.: No

Unique identifier for persons Are patients uniquely identified in the data source?: No

Diagnostic codes: Captured

Diagnosis / medical event vocabulary: ICD-10

ICD-9

Other

SNOMED CT

Diagnosis / medical event vocabulary, other: LOINC

Medicinal product information: Captured

Medicinal product information collected: Brand name

Package size

Medicinal product vocabulary: RxNorm

Quality of life measurements: Captured

Quality of life measurements vocabulary: Not coded (Free text)

Lifestyle factors: Captured

Lifestyle factors collected: Frequency of exercise

Tobacco use

Sociodemographic information: Captured

Sociodemographic information collected: Age

Deprivation index

Ethnicity

Gender