Objectives & Characteristics of the Registry
The primary objective of this worldwide registry on PPCM is to establish the clinical epidemiology and the diagnostic/therapeutic processes of women suffering from this condition, as well as the collection of information on their offspring.
Characteristics
Data will be collected on possible risk factors, diagnosis, mode of delivery, standard management and therapeutic interventions currently performed in each centre for patients presenting with signs and symptoms of PPCM pre- or postpartum. Drug prescriptions and indications to perform diagnostic/therapeutic procedures will be completely left to the participating cardiologist’s decision. No specific protocols or recommendations for evaluation, management, and/or treatment will be put forth during this observational study. Data on 6 and 12 month maternal outcome will be collected.
The mandatory key questions qualifying a patient likely to have the diagnosis of PPCM are: Peripartum stage, Signs and/or symptoms of heart failure, Ejection fraction <45%. Retrospective patients can be enrolled up to 6 months from the start of the registry.
Participating centres could consider participating in related PPCM companion studies on genetics, biomarkers and device therapy.
Study Organisation
This registry is "centre-based" and is conducted by an Executive Committee consisting of scientific experts.
The Executive Committee is chaired by Karen Sliwa and Johann Bauersachs.
Executive Committee
Karen Sliwa, Co-Chair
Johann Bauersachs, Co-Chair
Katrin Bachelier
Uri Elkayam
Roger Hall
Denise Hilfiker-Kleiner
Aldo Pietro Maggioni
John McMurray
Alexandre Mebazaa
Frederic Mouquet
Mark Petrie
Piotr Ponikowski
Vera Regitz-Zagrosek
Jolien Roos-Hesselink
Maria Schaufelberger
Petar Seferovic
Ajay Shah
Luigi Tavazzi
Karin van Spaendonck-Zwart
Dirk van Veldhuisen