The CF programme

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Cystic fibrosis (CF)

About 1 in 2,500 babies born in the UK has cystic fibrosis (CF). This inherited condition can affect the digestion and lungs. Babies with CF may not gain weight well, and have frequent chest infections. Screening means that babies with CF can be treated early with a high energy diet, medicines and physiotherapy. Although a child with CF may still become very ill, early treatment is thought to help them live longer, healthier lives. If babies are not screened for CF and they do have the condition, they can be tested later but parents may have an anxious time before CF is recognised.

Documents to support the CF screening programme

Laboratory handbook

National standard protocol for CF in pdf or ppt formats

Policies and standards for newborn blood spot screening in the UK (April 2005)

National sweat test standards

'Cystic fibrosis is suspected' leaflet

'Carrier of a cystic fibrosis gene' leaflet

Repeat CF heel-prick test (second sample for raised IRT) - information for parents and information for health professionals

Communication guidelines

Sibling testing protocol

CF screen positive fax template letter

CF probable carrier fax tempate letter

CF suspected - follow-up form

CF probable carrier - follow-up form

Notifying a baby with CF not identified through the screening programme

Cystic fibrosis diagnostic outcomes reports