Skip to main content

Table 1 General information and study design of registers collaborating in the EuNeP project

From: European Network of Pregnancy Registers in Rheumatology (EuNeP)—an overview of procedures and data collection

 EGR2RePregRevNatusRhekiss
General information
 CountryFrance (FR)Switzerland (CH)Norway (NO)Germany (DE)
 Founding year2014201720062015
 Data reported byPhysician (rheumatologist, internist, others1), study nurse2, patient2,3Rheumatologist, study nurse, patientRheumatologist, study nurse, patientRheumatologist, study nurse, patient
 Way of data reportingWeb-based (paper-based2)Web-basedWeb-based (paper-based until 2016)Web-based, app for smartphones and tablets (only for patients)
Time of enrolment and frequency of visits
 Child wish/pre-conception
  Enrolment possibleYesYesYesYes
  Maximum number of visits8115
  Maximum observation time96 months6 months12 months24 months
  Frequency of data collectionEvery 12 monthsEvery 6 months
 Pregnancy
  Enrolment possible (up to WG)Yes (124)Yes (complete pregnancy)Yes (complete pregnancy)Yes (20)
  Maximum number of visitsUnlimited333
  Maximum observation timeComplete pregnancyComplete pregnancyComplete pregnancyComplete pregnancy
  Frequency of data collectionAt least once every trimesterOnce every trimesterOnce every trimesterOnce every trimester
 Postpartum
  Enrolment possibleNoYes5NoNo
  Maximum number of visits2534
  Maximum observation time12 months48 months12 months24 months
  Frequency of data collectionMonth 6, 12 ppMonth 2, 6, 12, 24, 48 ppWeek 6, month 6, 12 ppMonth 6, 12, 18, 24 pp
  1. Abbreviations: pp postpartum, WG week of gestation
  2. 1Internal medical specialists, obstetricians, and physicians of other specialities
  3. 2Data is always validated by a physician
  4. 3Patients fill out paper questionnaires, which are then entered into eCRFs by study coordinator
  5. 4Enrolment after WG 12 is possible in some specific cases
  6. 5Enrolment is possible until week 8 postpartum