title: EURObservational Research Programme: a worldwide registry on peripartum cardiomyopathy (PPCM) in conjunction with the Heart Failure Association of the European Society of Cardiology Working Group on PPCM.
abstract: BACKGROUND
  The EURObservational Research Programme is a rolling programme of cardiovascular registries and surveys of the European Society of Cardiology (ESC). These registries will provide information on the nature of cardiovascular disease and its management. This manuscript provides an update on new literature on peripartum cardiomyopathy (PPCM), published since the 2010 Position Statement from the Heart Failure Association of the European Society of Cardiology Working Group on PPCM, and describes a new registry on this under-recognized condition. Peripartum cardiomyopathy is an idiopathic cardiomyopathy presenting with heart failure secondary to left ventricular systolic dysfunction towards the end of the pregnancy, or in the months following delivery, where no other cause for heart failure is found.
  
  
  OBJECTIVE
  The PPCM Registry aims to describe disease presentation, comorbidities, diagnostic and therapeutic management of patients with PPCM, as well as information on their offspring. Centres not only from ESC and ESC-affiliated countries, but from around the world, are encouraged to participate.
  
  
  METHODS
  A prospective registry on patients presenting with PPCM. At the time of writing, approximately 100 patients have been enrolled from 20 countries. All data entry is online via secure passwords and is supported by well-trained information technology personnel.
  
  
  CONCLUSIONS
  The EURObservational Research Programme will allow a comparison of women from around the world, from different ethnic backgrounds, presenting with PPCM and will report on their 6 month and 12 month outcomes. The study aims to include 1000 patients and follow them for 1 year. New centres volunteering to participate in the study will be welcomed.
authors.affiliation: Hatter Institute for Cardiovascular Research in Africa, University of Cape Town, South Africa.
authors.forename: Karen
authors.initials: K
authors.lastname: Sliwa
authors.forename: Denise
authors.initials: D
authors.lastname: Hilfiker-Kleiner
authors.forename: Alexandre
authors.initials: A
authors.lastname: Mebazaa
authors.forename: Mark C
authors.initials: MC
authors.lastname: Petrie
authors.forename: Aldo P
authors.initials: AP
authors.lastname: Maggioni
authors.forename: Vera
authors.initials: V
authors.lastname: Regitz-Zagrosek
authors.forename: Maria
authors.initials: M
authors.lastname: Schaufelberger
authors.forename: Luigi
authors.initials: L
authors.lastname: Tavazzi
authors.forename: Dirk J
authors.initials: DJ
authors.lastname: van Veldhuisen
authors.forename: Jolien W
authors.initials: JW
authors.lastname: Roos-Hesslink
authors.forename: Ajay J
authors.initials: AJ
authors.lastname: Shah
authors.forename: Petar M
authors.initials: PM
authors.lastname: Seferovic
authors.forename: Uri
authors.initials: U
authors.lastname: Elkayam
authors.forename: Karin
authors.initials: K
authors.lastname: van Spaendonck-Zwarts
authors.forename: Katrin
authors.initials: K
authors.lastname: Bachelier-Walenta
authors.forename: Frederic
authors.initials: F
authors.lastname: Mouquet
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Kraigher-Krainer
authors.forename: Roger
authors.initials: R
authors.lastname: Hall
authors.forename: Piotr
authors.initials: P
authors.lastname: Ponikowski
authors.forename: John J V
authors.initials: JJ
authors.lastname: McMurray
authors.forename: Burkert
authors.initials: B
authors.lastname: Pieske
mesh_terms: D000328:Adult; D009202:Cardiomyopathies / Q000150:complications / Q000175:diagnosis / Q000453:epidemiology / Q000503:physiopathology / Q000628:therapy; D019468:Disease Management; D005260:Female; D006306:Health Surveys / Q000706:statistics & numerical data; D006333:Heart Failure / Q000209:etiology / Q000517:prevention & control; D006801:Humans; D038622:Internationality; D058725:Peripartum Period; D011247:Pregnancy; D011249:Pregnancy Complications, Cardiovascular / Q000175:diagnosis / Q000453:epidemiology / Q000503:physiopathology / Q000628:therapy; D011379:Prognosis; D015397:Program Evaluation; D011644:Puerperal Disorders / Q000175:diagnosis / Q000453:epidemiology / Q000503:physiopathology / Q000628:therapy; D012042:Registries / Q000706:statistics & numerical data*; D018487:Ventricular Dysfunction, Left / Q000209:etiology
keywords: Definition; Peripartum Cardiomyopathy; Registry