CFSPID

CFSPID – Cystic fibrosis screen positive, inconclusive diagnosis

When a baby’s newborn screening result is positive but cystic fibrosis is not confirmed through other methods.
Sometimes these children are later confirmed as having CF.

Why do we need a CFSPID Registry

There is limited data on the long-term outcomes, but it is clear from epidemiological studies that a significant number will have minimal or no phenotypic consequence . We also know from case reports that a small number will develop significant CFTR related airway disease that has an impact on their well-being and potentially their survival .

• What data do we collect and why?
list of variables (pdf).

How to join

Reports

Working Group