Become a citizen researcher into Twin-Twin Transfusion Syndrome

Published: Wednesday 07 March 2018

A new global research collaboration is seeking to improve outcomes for the twin pregnancy condition, Twin-Twin Transfusion Syndrome. This research is open to Australian parents and carers with experience in TTTS.

Twin-Twin Transfusion Syndrome (TTTS) is a serious condition that can affect monochorionic twin pregnancies (twins that share a single placenta). Without treatment, the risk of one or both twins dying is very high. Even with treatment, there is a risk of death, prematurity and serious health problems in childhood.

Research studies testing new treatments for TTTS often measure different outcomes. For example, when a new treatment is being tested, one researcher may decide to measure visual loss in childhood (an outcome) and another researcher may only measure hearing loss in childhood (a different outcome). The results from these two studies cannot be easily compared or combined, to see which treatments work best. This is a barrier to improving the care that women and their babies receive.

World authorities into this condition have formed the International Collaboration to Harmonise Outcomes for Twin-Twin Transfusion Syndrome or the CHOOSE project. CHOOSE is aiming to develop a common set of outcomes for the treatment of TTTS. This will enable future studies to measure consistent and meaningful outcomes.

CHOOSE is inviting different people (stakeholders) who have experience with TTTS  - for example, a parent or carer of a baby/babies who had TTTS; a health professional involved in the care of mothers and babies affected by TTTS; a person with an interest in TTTS research - to take part in this study and tell the researchers which outcomes are important to them.

This short video explains the project further.