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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

 

EGR2

RePreg

RevNatus

Rhekiss

General information

 Country

France (FR)

Switzerland (CH)

Norway (NO)

Germany (DE)

 Founding year

2014

2017

2006

2015

 Data reported by

Physician (rheumatologist, internist, others1), study nurse2, patient2,3

Rheumatologist, study nurse, patient

Rheumatologist, study nurse, patient

Rheumatologist, study nurse, patient

 Way of data reporting

Web-based (paper-based2)

Web-based

Web-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 possible

Yes

Yes

Yes

Yes

  Maximum number of visits

8

1

1

5

  Maximum observation time

96 months

6 months

12 months

24 months

  Frequency of data collection

Every 12 months

Every 6 months

 Pregnancy

  Enrolment possible (up to WG)

Yes (124)

Yes (complete pregnancy)

Yes (complete pregnancy)

Yes (20)

  Maximum number of visits

Unlimited

3

3

3

  Maximum observation time

Complete pregnancy

Complete pregnancy

Complete pregnancy

Complete pregnancy

  Frequency of data collection

At least once every trimester

Once every trimester

Once every trimester

Once every trimester

 Postpartum

  Enrolment possible

No

Yes5

No

No

  Maximum number of visits

2

5

3

4

  Maximum observation time

12 months

48 months

12 months

24 months

  Frequency of data collection

Month 6, 12 pp

Month 2, 6, 12, 24, 48 pp

Week 6, month 6, 12 pp

Month 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