2015 cff patient registry report

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 many patients are in the cffpr?

The CFFPR contains data on almost 50,000 unique patients and has been used for research reported in over 120 peer-reviewed manuscripts, in addition to numerous quality improvement and benchmarking initiatives.

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.

How do I contact the Cystic Fibrosis Foundation patient registry?

E-mail: afink@cff.org The Cystic Fibrosis Foundation Patient Registry is funded by the Cystic Fibrosis Foundation. Author Contributions: E.A.K., A.K.F., A.S., J.O., C.D.,

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 the life expectancy of a patient with CF?

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.

What is the life expectancy of a child with cystic fibrosis?

Based on the 2018 Registry data, if your child with cystic fibrosis is born between 2014 and 2018, you can expect them to live at least till 44 years. If your child is born in 2018, they have 50% chances to live till 47 years or more.

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.

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.

Why do CF patients need salt?

Salt is essential for muscle function, digestion, and nerve cell health. It also helps move fluid in and out of cells. Since CF patients have a higher than normal concentration of salt in their sweat, they need to replace the salt that is lost.

What are 5 symptoms of cystic fibrosis?

Symptoms of cystic fibrosis include:lung infections or pneumonia.wheezing.coughing with thick mucus.bulky, greasy bowel movements.constipation or diarrhea.trouble gaining weight or poor height growth.very salty sweat.

What is the 6 foot rule with cystic fibrosis?

Germs can spread as far as 6 feet when someone coughs or sneezes, landing on surfaces or in another person's eyes, nose, or mouth. That's why it's important for people with CF to stay at least 6 feet away from others with CF and anyone with a cold, flu, or infection.

Can CF go away?

There is no cure for cystic fibrosis, but treatment can ease symptoms, reduce complications and improve quality of life. Close monitoring and early, aggressive intervention is recommended to slow the progression of CF , which can lead to a longer life.

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.

How is cystic fibrosis diagnosed?

To diagnose cystic fibrosis, doctors usually perform blood tests. They may test sweat for high salt content, which can indicate cystic fibrosis. If the diagnosis is confirmed, doctors may evaluate the condition with a chest x-ray, chest or abdominal CT or MRI, abdominal ultrasound, or sinus CT.

How many patients were seen at CF Foundation in 2012?

As reported by the care centers during the annual reaccreditation process, there were 1,875 patients who were seen at accredited care centers in 2012 who did not provide consent to participate in the registry. This represents 6.3% of patients seen at CF Foundation–accredited care centers in 2012.

How is CFFPR data collected?

The CFFPR data are collected through a web-based portal, PortCF, which contains five electronic data capture forms: demographic, diagnosis, encounter, care episode, and annual review forms. All data are entered by staff at the care center programs from the data available in the medical record or in forms completed by patients or families. CFFPR questionnaires are available in the annual reports ( 2 ).

When was the Cystic Fibrosis Foundation established?

The Cystic Fibrosis Foundation Patient Registry was established in the 1960s and has continually evolved to keep pace with changes in technology and regulations, as well as improvements in the treatment of cystic fibrosis (CF).

How is CFFPR used?

The CFFPR contains data on almost 50,000 unique patients and has been used for research reported in over 120 peer-reviewed manuscripts, in addition to numerous quality improvement and benchmarking initiatives. The CFFPR captures a substantial portion of the U.S. patient population with CF and has robust and high-quality data in key variables of interest, such as lung function, nutritional status and hospitalizations. Data in the registry have been used for many years to compare center-level variation in care and outcomes. As CF registries are implemented in other countries, the CFFPR has also been used to compare treatment and outcomes between the United States and other countries ( 35 ). International comparisons leverage variation in availability and physician preference of therapies and can be facilitated with standardization of data collection across registries.

How many people in the US have CF in 2012?

On the basis of the two methods of estimating the number of persons with CF in the United States using national birth and death data, we derived estimates of 33,292 and 34,327 individuals with CF in the United States in 2012, respectively. In 2012, the CFFPR contained 27,804 individuals. Thus, approximately 81–84% of persons with CF were captured in the CFFPR in 2012, the most recent year for which national birth and mortality data were available.

What is CF Foundation?

All individuals diagnosed with CF and associated disorders (CFTR-related metabolic syndrome and CFTR-related disorders) who are seen at CF Foundation–accredited care center programs and provide informed consent are eligible to participate in the CFFPR. The CF Foundation has developed and sustains a network of 121 accredited CF care centers (comprised of 121 pediatric care programs and 105 adult care programs) and 51 affiliate programs across the United States ( see additional information available in the online supplement). All accredited care programs are required to participate in the CFFPR. A portion of care center funding is based on the number of patients enrolled in the CFFPR and the completeness of their records. Each program obtains institutional review board approval and written informed consent and assent, as appropriate, from participants and/or their legal guardians. The CF Foundation provides online user manuals, data entry guidelines, training sessions, and user support for care center staff who enter data into the CFFPR. The CF Foundation serves as the coordinating center for data collection and data analysis.

When was CFFPR established?

The CFFPR was established in the 1960s to collect information on patient demographics and survival ( 3 ). Regular updates have been made to comply with changes in regulations, improvements in data collection, and advances in new technology ( Figure 1) ( 4 ).