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Article
Open AccessInformation needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey
Parents of children who have a congenital anomaly can experience significant worry about their child’s health. Access to clear, helpful, and trustworthy information can provide a valuable source of support. In...
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Article
Open AccessQuality of life (QoL) for people with primary sclerosing cholangitis (PSC): a pragmatic strategy for identifying relevant QoL issues for rare disease
Primary sclerosing cholangitis (PSC) is a rare incurable disease of the bile ducts and liver which can significantly impair quality of life (QoL). No existing QoL tools are entirely suitable for people living ...
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Article
Open AccessQuality of life in primary sclerosing cholangitis: a systematic review
Primary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which can considerably impact quality of life (QoL). As part of a project develo** a measure of QoL for people with PSC, we conducte...
