COMPERA is a pulmonary hypertension (PH) registry that was established in 2007. The name stands for “Comparative, Prospective Registry of Newly Initiated Therapies for Pulmonary Hypertension”. Unlike most other PH registries, COMPERA includes patients with all forms of PH if drug therapy is indicated. COMPERA was originally founded in Germany and is the official German PH registry, but centers from numerous other European countries are now participating. At the time, the registry is one of the largest in its indication worldwide, with over 12,000 patients.

At a glance

Pulmonary (arterial) hypertension (PH, PAH) occurs when the pressure in the blood vessels leading from the heart to the lungs is too high (CDC). The term PH embraces a variety of diseases that have little in common apart from elevated blood pressure in the pulmonary circulation (Hoeper et al, Dt. Ärzteblatt 2017). For some forms of PH, there are manifold options for mono- and combination therapy, for others, there is no established therapy. Patient organisations on the international (PHA Europe) and the national level (pulmonale hypertonie e.V. und Pulmonale Hypertonie Selbsthilfe) provide information and services to PH patients. 

COMPERA, established in 2007, is a structured, non-interventional (observational) registry in PH expert centers. It documents PH therapy of patients of all age groups, with any form of PH or pulmonary arterial hypertension (PAH). With over 12,000 patients and over 100,000 follow-up visits, the registry is one of the largest in its indication. 

It is fully internet-based, and fulfils high quality standards through several measures like automated plausibility checks of data at entry, queries, and source data verification. Of course, COMPERA has been approved by the ethics committees of all participating centers, and data protection is ensured because all data are completely pseudonymized, so there is no possibility of inferring individual persons outside the clinic.

Current information about the registry can be found at ClinicalTrials.gov under the identifier NCT01347216.

The great value of COMPERA lies in the very detailed description of patient characteristics and their long-term follow-up. The registry serves several purposes: it provides real-world evidence data that complement randomised controlled trials in PH. On a center basis, data are useful for quality assurance: individual centers can confidentially compare their results with the combined outcome of other centers and the recommendations from guidelines. Results may inform planners of clinical studies and authors of clinical guidelines.

People affected by PH cannot register for participation in COMPERA themselves, but may contact one of the participating expert centers (see author list in the publications). Enrollment of additional centers is possible. Participating sites receive a detailled status report together with an overview on data and results every 6 months.

The registry has been initiated by investigators (researchers) and is fully independent of the pharmaceutical industry. It is being financed with unrestricted educational funds from Acceleron, AOP Orphan, Bayer, Ferrer, Janssen and OMT.

Publications

Results from COMPERA are published in international scientific journals in regular intervals. The registry has already produced numerous highly published scientific papers that have influenced the way we understand and treat the disease. To date, the following 25 peer-reviewed publications have been published, with the majority of articles being available free-of-charge in Medline: 

• Pausch et al.: Performance of the ESC/ERS 4-strata risk stratification model for PAH with missing variables. Eur Respir J 2023
• Distler et al: Treatment strategies and survival of patients with connective tissue disease and pulmonary arterial hypertension. Rheumatology 2023
• Schmidt et al.: Trends in COVID-19-associated mortality in patients with PH. Eur Respir J 2023
• Rosenkranz et al: Risk stratification and response to therapy in patients with PAH and comorbidities.  J Heart Lung Transplant 2023
• Hoeper et al: Phenotyping of idiopathic PAH. Lancet Respir Med 2022
• Hoeper et al: Prognostic value of improvement endpoints in PAH trials. J Heart Lung Transplant 2022
• Kaemmerer et al.: CHD-PAH. Cardiovasc Diagn Ther 2021
• Hoeper et al.: COMPERA 2.0 Refined four-stratum risk assessment model for PAH. Eur Respir J 2022
• Olsson et al.: PVR and Risk. Eur Respir J 2021
• Hoeper et al.: 10-year temporal trends in PAH. Eur Respir J 2022
• Vizza et al.: PAH-COPD. Chest 2021
• Kanwar et al.: Risk stratification in PAH using Bayesian analysis. Eur Respir J 2020
• Hoeper et al.: Cluster analysis of PAH patients. J Heart Lung Transplant 2020
• Kaemmerer et al.: PAH in patients with congenital heart disease. J Clin Med 2020
• Delcroix et al.: Risk assessment in CTEPH. Eur Respir J 2018
• Zelniker et al.: 6-min walk distance as prognostic tool. Clin Res Cardiol 2018
• Kramm et al.: CTEPH in Germany. Clin Res Cardiol 2018
• Hoeper et al.: Risk stratification in PAH. Eur Respir J 2017
• Opitz et al.: Pre- and postcapillary PH. J Am Coll Cardiol 2016
• Hoeper et al.: PAH epidemiology in Germany. Int J Cardiol 2016
• Hoeper et al.: PAH associated with chronic fibrosing interstitial lung diseases. PLOS One 2015
• Olsson et al.: Anticoagulation in PAH. Circulation 2014
• Hoeper et al.: PAH in the elderly. Int J Cardiol 2011
• Pittrow et al. COMPERA first results. Dtsch Med Wochenschr 2009

Data protection

In the COMPERA database, patient names or birth dates are not stored. Only physicians at the hospitals know the identity of their patients. Data are entered via secure internet connections, and stored password-protected on secured servers. They are not made availble in online repositories. The General Data Protection Guidelines are closely observed.

Data Sharing

Principally, data from COMPERA are available to other reviewers upon request. Interested researchers may submit requests for minimized anonymous dataset by contacting the study leader. Collaborations require a formal data sharing agreement.

Contact

Patients cannot apply directly for participation in the registry.
Physicians in PH expert sites who consider participation, kindly send an e-mail to hotline@compera.org.
Researchers who wish to suggest collaborations, please contact Hoeper.Marius@mh-hannover.de .
Journalists kindly contact hotline@compera.org to receive more information.