cystic fibrosis foundation patient registry annual data report 2017

In 2017, the Cystic Fibrosis Foundation analyzed the medical data of 23,106 people with CF in their Patient Registry Annual Data Report and found that: 85.3% were part of Classes I, II and III 14.7% were part of Classes IV and V 1

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What is in the annual cystic fibrosis report?

The annual report features data from over 99% of the UK cystic fibrosis (CF) population, who give consent for their data to be securely entered by their CF clinical teams with the aim of improving care for people with the condition.

What is the Australian cystic fibrosis data registry 2016?

Welcome to the 19th Annual Report from the Australian Cystic Fibrosis Data Registry (ACFDR) for the year 2016. Every year cystic fibrosis (CF) centres gather an enormous amount of incredibly valuable information that informs clinical care and provides data for researchers.

What is the proportion of adults in the cystic fibrosis registry?

6AUSTRALIAN CYSTIC FIBROSIS DATA REGISTRY – ANNUAL REPORT 2017 Figure 1.2 shows that the proportion of adults in the registry as a whole was 53.7 percent at

What are the trends in cystic fibrosis in the UK?

Improvements in lung function and a drop in the incidence of chronic Pseudomonas infection are two of the trends in CF in the UK revealed by the UK Cystic Fibrosis Registry’s Annual Data Report for 2017, published today.

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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.

How many people in the US have cystic fibrosis?

According to the Cystic Fibrosis Foundation Patient Registry, in the United States: 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).

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.

What country is CF most common?

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

What country is most affected by cystic fibrosis?

Ireland has the highest rate of CF per capita in the world, with approximately 1,400 children and adults in Ireland living with the condition. About 33 new cases of cystic fibrosis in Ireland are diagnosed each year.

What race gets cystic fibrosis the most?

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 gender is cystic fibrosis most common in?

How Are Men Affected by Cystic Fibrosis? 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.

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.

What celebrities have cystic fibrosis?

List of people diagnosed with cystic fibrosisNameLifeChristopher Davies(1978—)Alexandra Deford(1971–1980)Gunnar Esiason(1991—)Bob Flanagan(1952–1996)25 more rows

What percent of population has cystic fibrosis?

1 in 29 Caucasian-Americans. 1 in 46 Hispanic-Americans. 1 in 65 African-Americans.

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 celebrities have cystic fibrosis?

List of people diagnosed with cystic fibrosisNameLifeChristopher Davies(1978—)Alexandra Deford(1971–1980)Gunnar Esiason(1991—)Bob Flanagan(1952–1996)25 more rows

What gender is cystic fibrosis most common in?

How Are Men Affected by Cystic Fibrosis? 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.

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.

How many people died from cystic fibrosis in the UK in 2008?from statistics.blf.org.uk

Across the UK in 2008–12, 285 males and 313 females died from cystic fibrosis.

How many hospital admissions are there for cystic fibrosis?from statistics.blf.org.uk

Cystic fibrosis accounts for 9,500 hospital admissions and over 100,000 hospital bed days a year. A third of these are used by children under 15.

Who gets cystic fibrosis?from cystic-fibrosis.com

People with CF have inherited two copies of a mutated CF gene, meaning each parent was a carrier for CF. In the U.S., one in every 31 carries a mutation of the CF gene. 5 Called the cystic fibrosis transmembrane conductance regulator (CFTR) gene, this mutation prevents the CFTR protein from working properly. There are more than 1,700 known mutations of the disease. 6

How common is cystic fibrosis in white people?from cystic-fibrosis.com

Cystic fibrosis is one of the most common genetic disorders in white people in the United States, occurring in one of every 3,200 live births. It is less common in African Americans (1 in 17,000), Asian Americans (1 in 31,000) and Native Americans.

When was cystic fibrosis first recognized?from cystic-fibrosis.com

In the 1930s, doctors in Switzerland the U.S. described “cystic fibrosis of the pancreas” and cystic fibrosis was officially recognized as a disease. In the 1950s, life expectancy averaged a few months.

Which states have the most CF?from cystic-fibrosis.com

As of 2017, the U.S. states with the largest numbers of people living with CF are California (2,386), Texas (2,048), New York (1,644), and Florida (1,599). 6. Cystic fibrosis is most common among Caucasians. In the U.S., the chances of being a carrier of a CFTR mutation are: 1 in 29 Caucasian-Americans. 1 in 46 Hispanic-Americans.

What percentage of CF is a child?from cystic-fibrosis.com

People with only one copy of the defective CF gene are called carriers, and they do not have the disease. Each time two CF carriers have a child, the chances are: 25 percent (1 in 4) the child will have CF. 50 percent (1 in 2) the child will be a carrier but will not have CF.

How many copies of a gene do you need to have cystic fibrosis?from mayoclinic.org

The type of gene mutation is associated with the severity of the condition. Children need to inherit one copy of the gene from each parent in order to have the disease. If children inherit only one copy, they won't develop cystic fibrosis. However, they will be carriers and could pass the gene to their own children.

When can cystic fibrosis be diagnosed?from mayoclinic.org

In the U.S., because of newborn screening, cystic fibrosis can be diagnosed within the first month of life, before symptoms develop. But people born before newborn screening became available may not be diagnosed until the signs and symptoms of CF show up.

What is the mutation in the cystic fibrosis transmembrane conductance regulator?from mayoclinic.org

In cystic fibrosis, a defect (mutation) in a gene — the cystic fibrosis transmembrane conductance regulator (CFTR) gene — changes a protein that regulates the movement of salt in and out of cells. The result is thick, sticky mucus in the respiratory, digestive and reproductive systems, as well as increased salt in sweat.

Why do cystic fibrosis patients have dehydration?from mayoclinic.org

Electrolyte imbalances and dehydration. Because people with cystic fibrosis have saltier sweat, the balance of minerals in their blood may be upset. This makes them prone to dehydration, especially with exercise or in hot weather.

Why are men with cystic fibrosis infertile?from mayoclinic.org

Almost all men with cystic fibrosis are infertile because the tube that connects the testes and prostate gland (vas deferens) is either blocked with mucus or missing entirely. Certain fertility treatments and surgical procedures sometimes make it possible for men with CF to become biological fathers.

What is the most common cause of death for cystic fibrosis?from mayoclinic.org

Respiratory failure is the most common cause of death. Acute exacerbations. People with cystic fibrosis may experience worsening of their respiratory symptoms, such as coughing with more mucus and shortness of breath. This is called an acute exacerbation and requires treatment with antibiotics.

What are the symptoms of cystic fibrosis?from mayoclinic.org

People who are not diagnosed until adulthood usually have milder disease and are more likely to have atypical symptoms, such as recurring bouts of an inflamed pancreas (pancreatitis), infertility and recurring pneumonia. People with cystic fibrosis have a higher than normal level of salt in their sweat.