title: The International Endometriosis Evaluation Program (IEEP Study) - A Systematic Study for Physicians, Researchers and Patients.
abstract: BACKGROUND
  Endometriosis is a heterogeneous disease characterized by a range of different presentations. It is usually diagnosed when patients present with pain and/or infertility, but it has also been diagnosed in asymptomatic patients. Because of the different diagnostic approaches and diverse therapies, time to diagnosis can vary considerably and the definitive diagnosis may be delayed, with some cases not being diagnosed for several years. Endometriosis patients have many unmet needs. A systematic registration and follow-up of endometriosis patients could be useful to obtain an insight into the course of the disease. The validation of biomarkers could contribute to the development of diagnostic and predictive tests which could help select patients for surgical assessment earlier and offer better predictions about patients who might benefit from medical, surgical or other interventions. The aim is also to obtain a better understanding of the etiology, pathogenesis and progression of the disease.
  
  
  METHODS
  To do this, an online multicenter documentation system was introduced to facilitate the establishment of a prospective multicenter case-control study, the IEEP (International Endometriosis Evaluation Program) study. We report here on the first 696 patients with endometriosis included in the program between June 2013 and June 2015.
  
  
  RESULTS
  A documentation system was created, and the structure and course of the study were mapped out with regard to data collection and the collection of biomaterials.
  
  
  CONCLUSIONS
  The documentation system permits the history and clinical data of patients with endometriosis to be recorded. The IEEP combines this information with biomaterials and uses it for scientific studies. The recorded data can also be used to evaluate clinical quality control measures such as the certification parameters used by the EEL (European Endometriosis League) to assess certified endometriosis centers.
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: S
authors: S
authors: Burghaus
authors: Department of Obstetrics and Gynecology, University of Duesseldorf, Duesseldorf, Germany.
authors: T
authors: T
authors: Fehm
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany; Division of Hematology and Oncology, Department of Medicine, David Geffen School of Medicine, University of California at Los Angeles, Los Angeles, CA, USA.
authors: P A
authors: PA
authors: Fasching
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: S
authors: S
authors: Blum
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: S K
authors: SK
authors: Renner
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: F
authors: F
authors: Baier
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: T
authors: T
authors: Brodkorb
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: C
authors: C
authors: Fahlbusch
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: S
authors: S
authors: Findeklee
authors: Biostatistics Unit, Department of Gynecology and Obstetrics, Erlangen University Hospital, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: L
authors: L
authors: Häberle
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: K
authors: K
authors: Heusinger
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: T
authors: T
authors: Hildebrandt
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: J
authors: J
authors: Lermann
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: O
authors: O
authors: Strahl
authors: Certified Centre for Endometriosis at the MIC Klinik, Berlin, Germany.
authors: G
authors: G
authors: Tchartchian
authors: Certified Centre for Endometriosis at the MIC Klinik, Berlin, Germany.
authors: B
authors: B
authors: Bojahr
authors: Department of Obstetrics and Gynecology, University of Duesseldorf, Duesseldorf, Germany.
authors: A
authors: A
authors: Porn
authors: HELIOS University Hospital Wuppertal, Wuppertal, Germany.
authors: M
authors: M
authors: Fleisch
authors: MIC Centre, Women Health Clinic Dr. Geisenhofer, Munich, Germany.
authors: S
authors: S
authors: Reicke
authors: MIC Centre, Women Health Clinic Dr. Geisenhofer, Munich, Germany.
authors: T
authors: T
authors: Füger
authors: Rems-Murr-Klinik, Schorndorf, Germany.
authors: C-P
authors: CP
authors: Hartung
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: J
authors: J
authors: Hackl
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: M W
authors: MW
authors: Beckmann
authors: Department of Gynecology and Obstetrics, Erlangen University Hospital, Friedrich Alexander University of Erlangen-Nuremberg, Comprehensive Cancer Center Erlangen-EMN, Erlangen, Germany.
authors: S P
authors: SP
authors: Renner
keywords: biomarker; case control study; diagnostics; endometriosis; epidemiology