I am delighted to announce that a core outcome set for the evaluation of treatments for twin-twin transfusion syndrome has now been published. I have been working with a number of amazing people to develop these. Abstract below.
A minimum data set, known as a core outcome set, should standardise outcome selection, collection, and reporting across future twin-to-twin transfusion syndrome research.
An international steering group including healthcare professionals, researchers, and patients, guided the development of this core outcome set. Potential core outcomes, identified through a comprehensive literature review, were entered into a three round Delphi survey. Healthcare professionals, researchers, and patients were invited to participate. Consensus outcomes were entered into a modified nominal group technique to identify the final core outcome set.
One hundred and three participants, from 29 countries, participated in a three-round Delphi survey. Of those 88 completed the three rounds. Twenty-two consensus outcomes were identified and entered into a modified nominal group technique. Eleven healthcare professionals, two researchers, and three patients prioritised 12 core outcomes. Fetal core outcomes included live birth, fetal loss (including miscarriage, stillbirth, and termination of pregnancy), recurrence of twin-twin transfusion syndrome, twin anaemia polycythaemia syndrome and amniotic band syndrome. Neonatal core outcomes included gestational age at delivery, birthweight, neonatal mortality, brain injury syndromes, and ischaemic limb injury. Maternal core outcomes included maternal mortality and admission to level two or three care.
Embedding the core outcome set within future twin-to-twin transfusion syndrome research could make a substantial contribution to advancing the usefulness of research. Standardised definitions and measurement instruments are now required for individual core outcomes. This article is protected by copyright. All rights reserved.
The full-text article can be found here