The CONTRAST Study: Understanding SFGR

the contrast study understanding more about selective fetal growth restriction taps support sfgr

In a new series of articles, we’re learning about the different research studies that are out there, making a change in the world of twins. In this article, we invited Anne Noll, PhD student to tell us more about the CONTRAST Study and selective fetal growth restriction.

About the CONTRAST study:

The CONTRAST study is a prospective multicentre international cohort study on monochorionic twins with sFGR.

Selective fetal growth restriction (sFGR) in monochorionic twins may negatively impact the pregnancy. There is a substantial risk of fetal deterioration resulting in (iatrogenic) preterm birth or even intrauterine demise of one, or both fetuses. There are important unresolved challenges on a diagnostic level and underlying pathophysiological mechanisms of sFGR have not been fully clarified.

The current diagnostic classification system based on three different umbilical artery flow patterns has no increasing scale of severity and the observed flow patterns may be volatile in nature. This hinders optimal diagnostic management and complicates outcome prediction as the survival outcome differs per umbilical artery flow type. Consequently, parents encounter a great deal of uncertainty during the pregnancy. Since there is no treatment available for sFGR, predicting fetal deterioration is key in preventing single or double demise.

selective fetal growth restriction contrast study sfgr taps support

By testing several predictors, we are aiming to improve outcome prediction at the time of  sFGR diagnosis. We furthermore hypothesize that additional ultrasound parameters could be of benefit in making the current classification system more accurate and less variable. Extensive histological placental examinations will shine a light on microscopic abnormalities which can increase our knowledge of the pathophysiology.

Examining neurodevelopment of sFGR twins at two years of age will additionally be of great value for our understanding of the impact of sFGR and contribute to adequate patient counselling. Our study will evaluate the impact of a sFGR pregnancy on parental mental health and parent-to-infant(s) attachment, which has not been carried out this extensively before.

The main objective is to improve outcome prediction in sFGR by developing a prediction model at the time of sFGR diagnosis and by evaluating specific ultrasound parameters throughout the pregnancy. Secondary objectives assess several outcomes, such as increasing our pathophysiological knowledge of the development of sFGR, fetal and neonatal survival, neonatal morbidity, neurodevelopment outcomes of sFGR twin pregnancies as well as psychological impact of a sFGR pregnancy on the parents.

Current status:

What initially began as a collaborative effort among three countries (LUMC Leiden, UZ Leuven, and Karolinska University Hospital Stockholm) has evolved into a more extensive initiative, with three additional expert centers joining the project (BCNatal Barcelona, Mount Sinai Hospital Toronto, and Boston Children’s Hospital). This development is very exciting, and we anticipate that it will significantly enhance the study’s overall quality and impact.

The CONTRAST Study: Understanding SFGR

Currently, patient recruitment is underway at LUMC, UZ Leuven, and BCNatal, while preparations for patient inclusion at the other centers are in progress and expected to commence shortly. The study is scheduled to span over a period of two years, with an additional two-year follow-up phase.

More info on the study (in Dutch) can be found here:

TAPS Support would like to sincerely thank Anne Noll, who kindly wrote this article for our website. Anne is currently completing her PhD on Selective Fetal Growth Restriction and her research is part of a joint project between the Karolinska Institute (Sweden), UZ Leuven (Belgium) and the Leiden University Medical Center (The Netherlands). Learn more about her here.

For more information on the CONTRAST Study, please visit this link for contact details.

The TAPS Support Foundation remains committed to supporting research that will improve outcomes for monochorionic twins worldwide, and helping families to understand their diagnosis. Learn more about our mission on our foundation’s website.

Want to share your research or story with us? Please get in touch with us here.

A TAPS Story From South Africa: Emily and Aimee


We would like to thank the Cowan family for sharing Emily and Aimee’s TAPS story. To find out how you can help support the family, please click this link, or scroll to the bottom of the page.

2020 was a big year.  Covid came and took over all our lives.  And it is in these Covid times that Emily and Aimee’s TAPS story began.

After blood tests and double-checking, I had to tell my husband that I am pregnant again at 43.  We already have two teenagers at this stage of 11 and 13.  There was no laughter and cheering, just three weeks of tears.  After I went to the doctor for the first time, another two weeks of tears because we found out it was twins – MODI twins.

Continue reading “A TAPS Story From South Africa: Emily and Aimee”

Selective Reduction: A Letter From A Parent.

selective reduction taps twins twin anemia polycythemia sequence twins support

A post from a parent who went down the path of selective reduction.

This is not is a challenge to your story, or your choice, it’s just my story. It’s taken me 18mths to build up the courage to put my name to this. 

I turned to online groups in 2020 when our darling baby B, was diagnosed with sIUGR around the 19th week of pregnancy.  Our MFM and care team presented all options and of course we fought hard for both our girls. Over the next few weeks we had twice-weekly monitoring, at this point we had a 37% discordance (growing)and she was <1st%ile.

Continue reading “Selective Reduction: A Letter From A Parent.”

ORPHA… What?

twin anemia polycythemia sequence taps orpha code twins foundation stichting awareness rare disease

In January this year, Twin Anemia Polycythemia Sequence (TAPS) and 2 other diseases affecting monochorionic twins were granted an ORPHA Code and listed in the Orphanet database of rare diseases. But what does it mean that there’s an ORPHA code for TAPS?

 It’s an exciting step because it means that now, TAPS is officially listed as a rare disease and will open a lot of doors in relation to research and international collaborations and make it easier to collect data for research. 

But why is this important, and how will it help research? Let’s talk about it!

Continue reading “ORPHA… What?”