In view of the manifold options for mono- and combination therapy that have now emerged for patients with pulmonary (arterial) hypertension (PAH/PH), controlled clinical trials can only provide part of the information needed for optimal management. In order to gather adequate data on PAH/PH treatment in routine clinical care, the ongoing CompERA-XL register prospectively documents consecutive patients with newly initiated treatment of PAH/PAH since May 2007. The internet-based register fulfils high quality standards through several measures (minimum centre contribution of at least 10 patients per year, automated plausibility checks of data at entry, queries, monitoring with source data verification). It can be applied, among further purposes, for quality assurance: individual centers can confidentially compare their results with the combined outcome of other centers and the recommendations from guidelines. The register, currently active in 7 countries, presently follows up 785 patients with any kind of treatment for PH/PAH (now at 626 patient years). It is expected that the register contributes to optimization of specific drug therapy for PAH and PH.
Georg Thieme Verlag KG Stuttgart, New York.