patient registry anual report cff 2014

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 changes have been made to the cffpr data entry process?

In response to the increase in telehealth utilization in the first half of 2020, the CFFPR data entry process was modified on May 28, 2020, to include a “By Phone” or “By Phone/Computer with Video” as care location options. Prior to May 28, encounters that occurred via telehealth were specified as “other” location.

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.

When was CFF org published?

Milestones. 1938: Dorothy Andersen, MD, publishes the first characterization of a disease mysteriously taking the lives of children: cystic fibrosis. 1955: The Cystic Fibrosis Foundation is formed by a group of concerned parents who are determined to save the lives of their children.

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 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.

What is CFF number?

Toll free: 800-FIGHT-CF (800-344-4823) Email: info@cff.org (see the Chapter Directory for local e-mail addresses)

What does the CFF do?

The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.

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.

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.

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.

Does cystic fibrosis get worse with age?

Cystic fibrosis tends to get worse over time and can be fatal if it leads to a serious infection or the lungs stop working properly. But people with cystic fibrosis are now living for longer because of advancements in treatment.