Current recommendations include review at 6 months and then annual follow‐up of children with CFSPID then normally, at around 6 years, discharge to primary care with advice on when they should seek additional review [3], however we know from adult clinics that some people with the same combination of CFTR gene variants present later in life with symptoms and testing is consistent with a diagnosis of CFTR‐RD, or even CF [6, 7]. This evidence concerns the gene CFTR and cystic fibrosis.