Uptake and Patient Perspectives on Additional Testing for Novel Disease-Associated Genes: Lessons from a PAH Cohort.
Samara M A JansenLieke M van den HeuvelArjan C Houwelingvan J Peter TintelenFrances S de ManAnton Vonk NoordegraafHarm Jan BogaardPublished in: Genes (2021)
Our report shows the importance of (re-)contact and interest of patients (as indicated by the uptake, mild psychosocial impact and appreciation) in PAH.