Comparative, Prospective Registry of Newly Initiated Therapies for Pulmonary Hypertension

22/04/2024
22/10/2026
Data source
Human
Disease registry
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Population Qualitative Data

Population age groups

Estimated percentage of the population covered by the data source in the catchment area

10% is a conservative estimate. Pulmonary arterial hypertension (PAH), one specific type of PH, affects approximately 15 to 50 individuals per million, according to the European Lung Foundation. Given the population of the European Union is roughly 447 million, this would suggest an estimated 6,705 to 22,350 individuals could be affected by PAH across the EU. Of the 12,600 patients currently in the database, COMPERA documents 6,600 patients with PAH (Group 1), and 6,000 patients with non-PAH pulmonary hypertension (Groups 2-5).

Description of the population covered by the data source in the catchment area whose data are not collected (e.g., people who are registered only for private care)

Patients not receiving specialist care. COMPERA investigators are experts in the treatment of pulmonary hypertension, mostly pneumologists and cardiologists. Patients without written informed consent and those not available for long-term follow-up are also not documented.
Family linkage
No information provided.
Population

Population size

13.500

Active population size

10.000
Median observation time

Median time (years) between first and last available records for unique individuals

4,00

Median time (years) between first and last available records for unique active individuals (alive and currently registered)

3,80