The VASCERN Pregnancy and Family Planning Working Group (WG) is a transversal WG of VASCERN, coordinated by Professor Julie De Backer (Chair), Professor Guillaume Jondeau (Co-Chair) and Petra Borgards (ePAG representative), that deals with issues specifically related to pregnancy and the diseases of our five Rare Disease Working Groups.
The group meets every three months and liaises with the inter-ERN Transversal Working Group on Pregnancy and Family Planning. The aim is to stimulate research in the field of pregnancy and rare diseases, deliver specific Clinical Practice Guidelines for pregnancy planning and management, develop education and information for patient and healthcare professional and collect European-wide evidence on pregnancy management.
BELGIUM
Ghent University Hospital, Ghent, Belgium
VASCERN HTAD European Reference Centre, Dept of Cardiology and Center for Medical Genetics
Cliniques universitaires Saint-Luc, Brussels, Belgium
VASCERN VASCA European Reference Centre, Center for Vascular Anomalies
Prof. Laurence M. BOON
Plastic and Reconstructive Surgeon
Dr. Corinne HUBINONT
Obstetrician-Gynecologist
University Hospital of Antwerp, Antwerp, Belgium
VASCERN HTAD European Reference Centre, Center of Medical Genetics
DENMARK
Dr. Pernille M TØRRING
Clinical Geneticist
FRANCE
AP-HP, Hôpital Bichat-Claude Bernard, Paris, France
VASCERN HTAD European Reference Centre, CRMR MarfanSyndrome and related disorders, department of cardiology
Pregnancy WG Co-Chair
Prof. Guillaume JONDEAU
Cardiologist, VASCERN Coordinator, HTAD-WG Co-Chair
Dr. Agnès BOURGEOIS-MOINE
Obstetrician-Gynecologist
CHU de Lyon HCL, GH Est-Hôpital Femme Mère Enfant
Lyon, France
VASCERN HHT European Reference Centre, CRMR Rendu-Osler
Dr. Olivier DUPUIS
Obstetrician-Gynecologist
HHT-WG
AP-HP, CHU Paris IdF Ouest, HEGP Hôpital Européen Georges Pompidou, Paris, France
VASCERN MSA European Reference Centre, Rare Vascular Diseases Reference Centre (CRMR)
Dr. Michael FRANK
Consultant Cardiologist
MSA-WG Chair
Prof. Alexandra BENACHI
Obstetrician-Gynecologist
GERMANY
Petra BORGARDS
ePAG advocate for the Pregnancy WG
Essen University Hospital, Essen, Germany
VASCERN HHT European Reference Centre – Essen Center for Rare Diseases
Dr. Freya DROEGE
ENT Physician
NETHERLANDS
Radboud university medical center, Nijmegen, Netherlands
VASCERN VASCA European Reference Centre, Expert center for Hemangioma and Vascular Anomalies (Hecovan)
Dr. Carine VAN DER VLEUTEN
Dermatologist
Erasmus Medical Center, Rotterdam, The Netherlands
VASCERN HTAD European Reference Centre, Department of Clinical Genetics and Cardiology
Prof. Jolien ROOS-HESSELINK
Cardiologist
Nij Smellinghe hospital, Drachten, The Netherlands
VASCERN PPL European Reference Centre, Expert Center for lymphovascular medecine
Dr. Kirsten VAN DUINEN
Dermatologist
Dr. Janine DICKINSON
Dermatologist
SWEDEN
Karolinska University Hospital, Stockholm, Sweden
VASCERN HTAD European Reference Centre, Department of Clinical Genetics
Recommendations from VASCERN’s Dos and Don’ts Factsheets
- Pregnancy delivery and postpartum care in HHT
- Pregnancy delivery and postpartum care in HTAD
- Pregnancy delivery and postpartum care in vEDS (MSA WG)
- Pregnancy delivery and postpartum care in PPL
Campens L, Baris L, Scott NS, Broberg CS, Bondue A, Jondeau G, Grewal J, Johnson MR, Hall R, De Backer J, Roos-Hesselink JW; ROPAC investigators group. Pregnancy outcome in thoracic aortic disease data from the Registry Of Pregnancy And Cardiac disease Heart. 2021 Jan 19:heartjnl-2020-318183. doi: 10.1136/heartjnl-2020-318183. Epub ahead of print. PMID: 33468574.
Regitz-Zagrosek V, Roos-Hesselink JW, Bauersachs J, Blomström-Lundqvist C, Cífková R, De Bonis M, Iung B, Johnson MR, Kintscher U, Kranke P, Lang IM, Morais J, Pieper PG, Presbitero P, Price S, Rosano GMC, Seeland U, Simoncini T, Swan L, Warnes CA; ESC Scientific Document Group. 2018 ESC Guidelines for the management of cardiovascular diseases during pregnancy. Eur Heart J. 2018 Sep 7;39(34):3165-3241. doi: 10.1093/eurheartj/ehy340. PMID: 30165544.
Videos
What to know before and during pregnancy in HTAD
This PoK video gives a comprehensive overview of the issues to consider for patients with HTAD considering pregnancy. The main considerations include risk of recurrence, risk of an aortic event (during pregnancy/delivery), risks to the foetus, risks of the medications used during pregnancy and risks of further progressive disease in the mother. Appropriate advice for each patient will need to be individualized, according to each patient’s circumstances and medical history, which is why HTAD patients should talk to their cardiologist when they are considering pregnancy.