TY - JOUR
T1 - Managing infants with craniofacial malformations – Where to go next?
AU - Poets, Christian F.
AU - Abadie, Veronique
AU - Breugem, Corstiaan
AU - Wallis, Colin
AU - Abel, Francois
AU - Chalouhi, Christel
AU - Kruisinga, Frea
AU - Sorg, Anna-Lisa
AU - Wiechers, Cornelia
N1 - Funding Information: We are grateful to our teams for their help with these patients and with setting up this register, and to Kelly Evans for planting the idea of a register. Publisher Copyright: © 2021
PY - 2021/12
Y1 - 2021/12
N2 - Treatment of infants with craniofacial malformations, e.g. Robin sequence, is characterized by considerable heterogeneity and a lack of randomized trials to identify an optimal approach. We propose to establish an international register using a common minimal dataset that will better allow for a comparison between key determinants and outcomes in these patients. In infants, this should include an assessment of mandibular micrognathia, glossoptosis, upper airway obstruction, weight gain and mode of feeding. Later on, neurocognition, speech development, hearing and quality of life should also be included. Together, these data will help better to advice parents on which treatment to choose for their baby with a craniofacial malformation.
AB - Treatment of infants with craniofacial malformations, e.g. Robin sequence, is characterized by considerable heterogeneity and a lack of randomized trials to identify an optimal approach. We propose to establish an international register using a common minimal dataset that will better allow for a comparison between key determinants and outcomes in these patients. In infants, this should include an assessment of mandibular micrognathia, glossoptosis, upper airway obstruction, weight gain and mode of feeding. Later on, neurocognition, speech development, hearing and quality of life should also be included. Together, these data will help better to advice parents on which treatment to choose for their baby with a craniofacial malformation.
UR - http://www.scopus.com/inward/record.url?scp=85115165210&partnerID=8YFLogxK
U2 - https://doi.org/10.1016/j.siny.2021.101289
DO - https://doi.org/10.1016/j.siny.2021.101289
M3 - Review article
C2 - 34548245
SN - 1744-165X
VL - 26
JO - Seminars in fetal & neonatal medicine
JF - Seminars in fetal & neonatal medicine
IS - 6
M1 - 101289
ER -