Why is this work needed?
Cystic fibrosis (CF) is a genetic condition that causes a build-up of thick sticky mucus in the lungs, digestive system and other organs. It causes a wide range of challenging symptoms affecting the entire body. There is no cure, but medical research has made considerable advances in improving the lives of people with this condition. As new treatments emerge, it is vital that their safety and efficacy are closely monitored.
What is happening?
The UK Cystic Fibrosis Registry is a secure centralised database of data from people with CF in the UK. Over 99% of people with CF have consented to take part.
What are the benefits?
The data is used to improve the health of people with CF through research, to guide quality improvement at care centres and to monitor the safety of new drugs. The high level of coverage provided by the Registry makes it particularly valuable for long term monitoring of treatment safety.
What type of data is involved?
The CF Registry includes a range of information about individuals who choose to participate, including demographic, clinical care, and health outcomes data.
What is the legal basis for accessing the data?
Individuals consent to participate and the Registry has Research Ethics Committee approval.
Only de-personalised registry data is ever released for use. A strict evaluation process, overseen by a committee of experts, ensures that Registry data is used in line with the consent that has been provided, and that it has maximum impact for people with CF.
Who funds and collaborates on this work?
The UK CF Registry is sponsored and managed by the Cystic Fibrosis Trust.
Where can I go for more information?
- Page updated: 25 June 2018
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