The UK NSC recommendation on Cystic fibrosis screening in newborns (currently in consultation)
Find general information about population health screening.
More about Cystic fibrosis (newborn)
Cystic Fibrosis (CF) was recognised as a specific entity by Dorothy Andersen of New York in 1938. The condition is characterised by early onset of severe intestinal malabsorption, failure to thrive and recurrent chest infections and pneumonia which, if untreated, leads to death from malnutrition and respiratory failure in infancy or early childhood. Due to improved treatment, particularly with antibiotics and better pancreatic enzyme replacement therapy, average survival has steadily improved to around 37 years.
Screening in the UK
Compare how screening is offered across the UK.
The stakeholder groups will be involved when the recommendation is next reviewed. If you think your organisation should be added, please contact us. More information for stakeholders can be found in appendix C of the UK NSC evidence review process.
Confidentiality and disclosure
Information provided in response to this consultation, including personal information, may be subject to publication or release to other parties or to disclosure in accordance with the access to information regimes (these are primarily the Freedom of Information Act 2000, the Data Protection Act 1998, and the Environmental Information Regulations 2004). If you want information, including personal data that you provide to be treated as confidential, please be aware that, under the FOIA, there is a statutory Code of Practice with which public authorities must comply and which deals, amongst other things, with obligations of confidence.
In view of this it would be helpful if you could explain to us why you regard the information you have provided as confidential. If we receive a request for disclosure of the information we will take full account of your explanation, but we cannot give an assurance that confidentiality can be maintained in all circumstances. An automatic confidentiality disclaimer generated by your IT system will not, of itself, be regarded as binding on the UK National Screening Committee.
Any request for information to be treated in confidence will be taken into consideration in the publication of responses to the consultation. The UK National Screening Committee intends to publish all responses following the closure of the consultation period, however we will not publish responses from respondents who request that any of the information in their response, including personal data, should be handled in confidence. The UK National Screening Committee reserves the right not to publish or take into account any representations which are openly offensive or defamatory.
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