cystic fibrosis foundation patient registry 2016 annual data report

The UK CF Registry’s Annual Data Report for 2016, published today, reveals that 50% of those born with CF today are expected to live to 47 or more (the median predicted survival). The median age of people with CF in the UK stands at 20, with 60.4% of the overall CF population aged 16 or over.

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What is the CF Foundation patient 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 is the life expectancy of someone with cystic fibrosis (CF)?

The UK CF Registry’s Annual Data Report for 2016, published today, reveals that 50% of those born with CF today are expected to live to 47 or more (the median predicted survival). The median age of people with CF in the UK stands at 20, with 60.4% of the overall CF population aged 16 or over.

What is the prevalence of cystic fibrosis in the UK?

The median age of people with CF in the UK stands at 20, with 60.4% of the overall CF population aged 16 or over.

What do CF Foundation-accredited care centers do?

CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry.

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How do you cite the cystic fibrosis Foundation?

Cite This ItemChicago citation style: Cystic Fibrosis Foundation. Cystic Fibrosis Foundation . United States, 2002. ... APA citation style: Cystic Fibrosis Foundation. (2002) Cystic Fibrosis Foundation . United States. ... MLA citation style: Cystic Fibrosis Foundation. Cystic Fibrosis Foundation . United States, 2002.

What is the cystic fibrosis 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 is the epidemiology of cystic fibrosis?

There are close to 40,000 children and adults living with cystic fibrosis in the United States (and an estimated 105,000 people have been diagnosed with CF across 94 countries). Approximately 1,000 new cases of CF are diagnosed each year. More than 75 percent of people with CF are diagnosed by age 2.

How common is cystic fibrosis Worldwide?

Worldwide, about 70,000 to 100,000 people have cystic fibrosis.

How many people in Europe have cystic fibrosis?

The results of literature reviews, surveys, and registry analyses revealed a mean prevalence of 0.737/10,000 in the 27 EU countries, which is similar to the value of 0.797 in the United States, and only one outlier, namely the Republic of Ireland at 2.98.

Where is cystic fibrosis most common in the world?

The highest CF incidence is seen in Northern European countries with 1/3.000 live births. In the United States, the disease occurs in roughly 1 in 3.000 white Americans, 1 in 4.000-10.000 in Hispanics, and 1 in 15.000-20.000 in African Americans (10). In Africa and Asia CF is very rare.

Is cystic fibrosis increasing or decreasing?

Results show that the expected number of adults (aged 18 and older) with cystic fibrosis is expected to increase by 28% from 6,212 in 2017 to 7,981 in 2030 (95% PI 7,797–8,162).

What is the death rate of cystic fibrosis?

Mortality rate varies with age and is likely to be about 1–2% per year overall.

What race is cystic fibrosis most common in?

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 are 3 interesting facts about cystic fibrosis?

Top 5 Things You (Probably) Don't Know About Cystic FibrosisPeople with CF can't be together. ... CF and Tay Sachs are tied as the most fatal Jewish genetic diseases. ... Our skin is super salty. ... We are master deceptors. ... The nickname for CF is 65 roses.

Is it possible to have mild 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's the meaning of epidemiology?

By definition, epidemiology is the study (scientific, systematic, and data-driven) of the distribution (frequency, pattern) and determinants (causes, risk factors) of health-related states and events (not just diseases) in specified populations (neighborhood, school, city, state, country, global).

What population is most affected by cystic fibrosis?

Frequency. 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 birth prevalence of cystic fibrosis?

Cystic fibrosis (CF) has traditionally been defined as the most common life-threatening inherited disorder of children in Caucasian populations, with an incidence of 1/2500 live births [1].

Is CF more common in males or females?

Males account for slightly more than 50 percent of all cases of cystic fibrosis (CF) but generally have better outcomes than females until about age 20. After that, men and women experience roughly equal outcomes for long-term survival.

What is CF in Australia?

Cystic Fibrosis organisations in Australia provide support and services to people with Cystic Fibrosis (CF ) and their carers and families. This is complemented by a commitment to research and a quality improvement program focussing on improved clinical care for people with CF.

What is the ACFDR report?

This Annual Report is a testament to the large amount of information gathered by Cystic Fibrosis Centres and the innovative science surrounding the treatment of cystic fibrosis (CF). As treatment discoveries continue to make lives better for people with cystic fibrosis the ACFDR will provide us with a clinical perspective and the important statistics that will continue to improve patient care.

When was the ACFDR released?

In 1996 work began on developing the Australian Cystic Fibrosis Data Registry (ACFDR) and the working model was released in 1998. CFA is responsible for the funding and data custodianship of the ACFDR and on 1 st September 2016 the Monash Data Registry Centre became the new management company. The future of the ACFDR is in great hands and the move will enable new digital and clinical development to be undertaken.

Why is ACFDR important?

The ACFDR is a vital tool for the CF community as it stimulates ground-breaking research, supports clinical teams to improve care, monitors the safety of new medicines and through the ACFDR Annual Report, gives people with CF and their families up-to-date information about the condition.

Who is the ACFRT?

The Australian Cystic Fibrosis Research Trust (ACFRT) is managed by Cystic Fibrosis Australia (CFA). Since 1989 it has funded more than 300 projects valued at over $6,000,000.

Is the ACFDR report 2020?

This year the 2020 Annual Report of the ACFDR is launched earlier and in a more comprehensive manner than any of the earlier reports in the prior twenty-one years. As you will see the numbers of Australians with CF entered into the Registry has continued to rise and the completeness of data across the dataset is greater than before. This demonstrates wonderful collaboration between the Monash Registry Team, Cystic Fibrosis Australia and all of the CF centres, nationally.

Is Cystic Fibrosis Australia a subject matter expert?

Cystic Fibrosis Australia has established a consistent approach to advocacy across Australia and is now a subject matter expert for government , industry and the media.