The CF Foundation Patient Registry collects information on the health status of people with cystic fibrosis who receive care in CF Foundation-accredited care centers and agree to participate in the Registry.

What is the CF Registry?

The CF Foundation Patient Registry collects information on the health status of people with cystic fibrosis who receive care in CF Foundation-accredited care centers and agree to participate in the Registry.

What percentage of UK has cystic fibrosis?

It’s estimated around 1 in every 25 people in the UK are carriers of cystic fibrosis. If both parents are carriers, there’s a: 1 in 4 chance their child won’t inherit any faulty genes and won’t have cystic fibrosis or be able to pass it on.

What is Port CF?

Port CF is a New Zealand data registry owned by CFNZ. It uses anonymous patient data to analyse trends in CF care. These reports can be compared to CF registries in the UK and Australia to help determine how NZ compares to other countries. They also provide information to help CFNZ lobby for new treatments. Download.

What is CF survey?

The Cystic Fibrosis Trust’s CF Insight Survey is released every year to help find out what cystic fibrosis means to people with the condition year on year, and to feed into the work of the Trust.

What percentage of the population has cystic fibrosis?

Cystic fibrosis is a common genetic disease within the white population in the United States. The disease occurs in 1 in 2,500 to 3,500 white newborns. Cystic fibrosis is less common in other ethnic groups, affecting about 1 in 17,000 African Americans and 1 in 31,000 Asian Americans.

What is the prognosis for cystic fibrosis?

Outlook (Prognosis) Lung disease eventually worsens to the point where the person is disabled. Today, the average life span for people with CF who live to adulthood is about 44 years. Death is most often caused by lung complications.

Is there a mild form of cystic fibrosis?

Atypical CF is a milder form of the CF disorder, which is associated with mutations of the cystic fibrosis transmembrane receptor gene. Instead of having classic symptoms, individuals with atypical CF might only have mild dysfunction in 1 organ system and might or might not have elevated sweat chloride levels.

What month is cystic fibrosis awareness?

May is Cystic Fibrosis Awareness Month.

What is the color for cystic fibrosis?

Turns out, the color green can be seen throughout my journey with cystic fibrosis. Traditional green awareness ribbons represent organ donation, a milestone that I will cherish forever.

What country has the most cystic fibrosis?

The U.S. is among countries with the highest incidence of CF, with about 30,000 people currently living with the disease.

What does the UK cf registry annual data report tell us?

The detailed report includes data about individual cystic fibrosis centres, to help the centres benchmark themselves against their peers, and provide people with cystic fibrosis information that applies to their specific care team. The UK CF Registry annual data report for 2018 is now available to download.

What is the UK cystic fibrosis registry?

The UK Cystic Fibrosis Registry is a secure centralised database, sponsored and managed by the Cystic Fibrosis Trust. It records health data on consenting people with cystic fibrosis (CF) in England, Wales, Scotland and Northern Ireland. How does the Registry work?

Who can apply to access data from the UK cf registry?

Researchers from recognised institutions can apply for access to aggregated, anonymised, or pseudonymised data from the UK CF Registry to perform their own analysis for the benefit of people with cystic fibrosis. The UK CF Registry sends annual data to the ECFS Patient Registry.

How is cystic fibrosis (CF) data entered?

Cystic fibrosis (CF) care teams enter data to the UK CF Registry at every specialist centre and clinic across the UK, with over 99% of people with CF consenting to their data being submitted. Registry results are published each year in the annual report.