foundation cf. patient registry : annual data report.

Where is the CF Foundation annual data report based?

ABOUT THIS REPORT The Annual Data Report is based on data entered in the CF Foundation Patient Registry through our online portal, PortCF©. Data are entered by teams of dedicated health professionals in our nationwide network of more than 120 CF Foundation-accredited Care Centers. Inclusion Criteria

What data is included in the CF Foundation patient registry?

The CF Foundation Patient Registry (CFFPR) is composed of data collected via the CF Foundation Care Center Network, including participant demographic characteristics, routine clinical measurements, therapeutic history, hospitalizations, transplant, and vital status.

How are CF data reported to the cffpr?

Data reported to the CFFPR are obtained exclusively through participant contact with the CF Care Center, which is based on an interdisciplinary approach to monitor aspects of CF-related disease.

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

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.

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.

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 life expectancy for 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.

Why do CF patients have ports?

Ports can be used by people with CF who require long-term, frequent intravenous (IV) antibiotic treatment or who have poor venous access ('difficult veins'). Ports are not usually considered for people with CF who have short-term treatment needs or who have infrequent courses of IV antibiotics.

What percentage of the population has cystic fibrosis?

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

Is Cystic Fibrosis Foundation a good charity?

-- 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.

When was the Cystic Fibrosis Foundation website made?

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

What is the oldest cystic fibrosis survivor?

Marlene Pryson, 86, probably one of the oldest individuals living with cystic fibrosis, certainly possesses all of these characteristics.

What is the oldest someone with cystic fibrosis has lived?

Senior citizens with cystic fibrosis Thanks to advances in DNA testing, doctors are identifying more and more people with CF for the first time well into their 50s, 60s, and 70s. The oldest person diagnosed with CF for the first time in the U.S. was 82, in Ireland was 76, and in the United Kingdom was 79.

Is there a cure for cystic fibrosis coming soon?

Even with the promising research currently underway, new treatments or cures for CF are still likely years away. New treatments require years of research and trials before governing agencies will allow hospitals and doctors to offer them to patients.