Newborn screening for haemophilia: The views of families and adults living with haemophilia in the UK.

Haemophilia : the Official Journal of the World Federation of Hemophilia
Felicity K BoardmanPhilip J Young

Abstract

As genomic sequencing become more efficient and cost-effective, the number of conditions identified through newborn screening globally is set to dramatically increase. Haemophilia is a candidate condition; however, very little is known about the attitudes of the haemophilia community towards screening. This study aimed to outline the perspectives of adults with haemophilia and their families towards newborn screening. A paper and online survey on screening were distributed to every family known to the Haemophilia Society UK. Data collection occurred between January and June 2018. In total, 327 participants completed the survey: 76% were a relative of a person with haemophilia and 24% had haemophilia themselves; 83% were living with haemophilia A and 17% with haemophilia B. The vast majority supported newborn screening (77%) and preferred it to other forms of screening (preconception or prenatal). Participants supported newborn screening primarily because they viewed it as a means to facilitate early support and treatment, facilitate informed decisions about future pregnancies and prevent the "diagnostic odyssey." The 23% who did not support the screen did not associate these particular benefits with newborn screening. Haemophil...Continue Reading

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Citations

May 28, 2019·Haemophilia : the Official Journal of the World Federation of Hemophilia·Paul C Moorehead
Aug 10, 2020·Current Gene Therapy·Miaojin ZhouDesheng Liang
Feb 8, 2021·Metabolomics : Official Journal of the Metabolomic Society·Nipun SainiSusan M Smith
Sep 28, 2021·European Journal of Human Genetics : EJHG·Felicity K Boardman, Corinna C Clark

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