cystic fibrosis foundation patient registry annual data report 2018

What is the patient registry for cystic fibrosis?

The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years. 4 min read

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.

What is the prevalence of cystic fibrosis in the UK?

20 is the median age of people with CF in the UK. 60.4% of the population are aged 16 or over, and 56.2% of the population are aged 18 or over. 2,751 (27.9%) people were diagnosed by newborn screening.

What data does the ECFS patient registry publish?

Each calendar year the ECFS Patient Registry publishes a detailed Annual Report with demographic and clinical data from people with CF throughout Europe and neighbouring countries who agree to participate in the Registry. We also publish At-a-glance Reports with key information from the Annual Data Reports.

What is 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.

How much is the CF Foundation worth?

For $3.3 billion. Suddenly, the CF Foundation was the largest disease-focused charity in the country as measured by net assets. Most medical charities don't get any money from the research they fund, and none had ever gotten a windfall so big.

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.

Is the Cystic Fibrosis Foundation reliable?

-- The Cystic Fibrosis Foundation announced today it has received a coveted 4-star rating for sound fiscal management from Charity Navigator, the largest charity evaluator in the United States. The Foundation earned four out of four possible stars for achieving excellence in fiscal responsibility.

Who is the CEO of Cystic Fibrosis Foundation?

Michael Boyle, MD, is president and chief executive officer of the Cystic Fibrosis Foundation. Prior to his appointment as president and CEO, Dr. Boyle served as the Foundation's senior vice president, therapeutics development from 2015-2019.

Is CFF org a nonprofit?

The Cystic Fibrosis Foundation (CFF) is a voluntary, non-profit organization. Its mission is to assure the development of the means to cure and control cystic fibrosis (CF) and to improve the quality of life for those with the disease.

What ethnic group 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.

Is there a cure for cystic fibrosis 2022?

FRIDAY, Feb. 18, 2022 (HealthDay News) -- Hundreds of new proteins that may be linked to cystic fibrosis have been identified by researchers and could point the way to better treatments for people with the genetic disease. There is no cure for cystic fibrosis, which affects more than 90,000 people worldwide.

How many employees does the Cystic Fibrosis Foundation have?

Cystic Fibrosis FoundationFoundedDecember 16, 1955Employees (2016)731Volunteers (2016)250,000Websitewww.cff.orgFormerly calledNational Cystic Fibrosis Research Foundation11 more rows

How much money has the Cystic Fibrosis Foundation raised?

The foundation raises about $130 million a year from donations. Dr.

Why is cystic fibrosis more common in Caucasian?

Thank you in advance. Cystic fibrosis is actually much more common in white Caucasian populations. These frequency differences are explained by the fact that CF is a genetic disease, due to the presence of two mutations in the CFTR gene (one from the father and one from the mother).

What is the life expectancy of someone with cystic fibrosis?

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.

How old is the average person diagnosed with cystic fibrosis?

23 days is the median age that people aged under 16 in 2018 were diagnosed with cystic fibrosis. 8.5% of people in the Registry were diagnosed at age 16 or over.

What is the average age for people with CF in the UK?

20 is the median age of people with CF in the UK. 60.4% of the population are aged 16 or over, and 56.2% of the population are aged 18 or over.

How old was the average person with pseudomonas in 2008?

The median age of people with chronic Pseudomonas was 24 years in 2008, compared to 29 in 2018. 88.9% of people with chronic Pseudomonas were on inhaled antibiotic therapy in 2018, compared to 76.1% in 2008.

Read the 2019 Registry annual data report

The UK CF Registry annual data report for 2019 (1.72MB) is now available to download. You can also view the at-a-glance version (432KB) of the report.

Registry reports

Read all of the UK CF Registry's annual reports, at-a-glance reports and Scotland reports from 2004 onwards.

COVID-19 in people with CF

The UK CF Registry is monitoring cases of COVID-19 in people with cystic fibrosis. Take a look at the current UK statistics for people with CF affected by COVID-19. We will update this information weekly to add new cases reported to the Registry.

Distribution of CF in the UK

Take a look at our interactive map, detailing the distribution of people with cystic fibrosis across the UK.

Registry survey

In early 2015, we asked people with CF and their parents about plans for future development of the UK CF Registry, to makes sure that it meets their needs as well as those of heathcare teams, researchers and the wider NHS. Thank you to everyone who took part, helping us shape the future of the Registry.

Genotype data by nation and age

The following has been published as a result of a data request submitted to the UK CF Registry.

PbR tariff bandings for people with cystic fibrosis in England

Since April 2013 Specialist Commissioners of cystic fibrosis care in England have made mandatory tariff payments to CF centres based on something called the ‘year of care tariff’. The tariff uses UK CF Registry data to categorise the severity of a person’s CF disease. The tariff only covers CF-related care at hospitals in England.

How old do you have to be to get CF?

The majority of patients who receive a diagnosis of CF are less than 2 years of age ( 1 ). However, with improved genetic testing, CF is being diagnosed in an increasing number of older patients ( 2 ).

Is CF a disease of childhood?

Related. Cystic fibrosis (CF) has long been thought of as a disease of childhood. However, with innovative new therapies, patients are living longer and healthier lives, and CF is slowly being more widely recognized as a disease of adults as well. Despite advances in treatment, the median life expectancy for a patient with CF is still in ...