patient registry anual report cff

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's new in the CF Registry?

The Registry contains data on people with CF from 1986 to 2020. During that time, substantial changes in specialized CF care have led to improved survival. This section shows the current and longitudinal distribution of demographic characteristics of individuals with CF in the Registry.

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 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.

Where is the CFF located?

Bethesda, MarylandCystic Fibrosis FoundationFoundedDecember 16, 1955Legal status501(c)(3) nonprofit organizationFocusCystic fibrosisLocationBethesda, MarylandChair, Board of TrusteesCatherine C. McLoud11 more rows

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 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.

What does CFF stand for?

CFFAcronymDefinitionCFFCystic Fibrosis FoundationCFFCare for the Family (UK; est. 1988)CFFCertified in Financial Forensics (professional credential issued by the American Institute of CPA's)CFFChemins de Fer Fédéraux (Swiss Federal Railways)61 more rows

What is medical term CFF?

Cystic fibrosis: A common grave genetic disease that affects the exocrine glands and is characterized by the production of abnormal secretions, leading to mucus buildup that impairs the pancreas and, secondarily, the intestine. Mucus buildup in lungs can impair respiration.

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 percentage of the population has cystic fibrosis?

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

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.

Is the CF Foundation a good charity?

(Bethesda, Md.) -- 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.

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.

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.