patient registry annual data report to the center directors 2013

What is included in the Cancer Registry annual report?

The annual report provides an overview of the cancer registry data for patients treated at GW Hospital and the MFA in previous year, detailing trends in cancer care at GW in comparison to national American Cancer Society data.

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 the annual data report based on?

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

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 Cffpr?

Rationale: The Cystic Fibrosis Foundation Patient Registry (CFFPR) is an ongoing patient registry study that collects longitudinal demographic, clinical, and treatment information about persons with cystic fibrosis (CF) in the United States.

What is the 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 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 epidemiology of cystic fibrosis?

There are close to 40,000 children and adults living with cystic fibrosis in the United States (and an estimated 105,000 people have been diagnosed with CF across 94 countries). Approximately 1,000 new cases of CF are diagnosed each year. More than 75 percent of people with CF are diagnosed by age 2.

How many people in Europe have CF?

The results of literature reviews, surveys, and registry analyses revealed a mean prevalence of 0.737/10,000 in the 27 EU countries, which is similar to the value of 0.797 in the United States, and only one outlier, namely the Republic of Ireland at 2.98.

How many people are affected by cystic fibrosis in Canada?

Cystic fibrosis (CF) is a rare disease affecting over 4,300 Canadians or roughly 1 in 3,600 live births. CF is a progressive, degenerative multi-system disease that affects mainly the lungs and digestive system.

Why can't two patients with cystic fibrosis be together?

For people with CF, being close to others with the disease puts them at greater risk of getting and spreading dangerous germs and bacteria. This is called cross‐infection. Not only are these dangerous germs difficult to treat, but they can also lead to worsening symptoms and faster decline in lung function.

Can two people with cystic fibrosis be together?

People with cystic fibrosis should never meet each other, as they carry bacteria within their lungs that could be harmful to each other.

Are you born with cystic fibrosis?

Cystic fibrosis (CF) is a genetic condition affecting more than 10,800 people in the UK. You are born with CF and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without knowing.

What are the first signs of cystic fibrosis in adults?

Respiratory signs and symptomsA persistent cough that produces thick mucus (sputum)Wheezing.Exercise intolerance.Repeated lung infections.Inflamed nasal passages or a stuffy nose.Recurrent sinusitis.

Is cystic fibrosis a terminal illness?

“CF is no longer a death sentence, and the research we are doing will continue to help our patients live longer and better lives.” CF, a genetic disease, affects a person's organs, primarily the lungs, and creates a thick, sticky mucus in the body that can lead to blockages, damage or infections to the affected organs.

What organs does cystic fibrosis affect?

CF causes thick mucus that clogs certain organs, such as the lungs, pancreas, and intestines. This may cause malnutrition, poor growth, frequent respiratory infections, breathing problems, and chronic lung disease.

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

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.

Who is the CEO of Cystic Fibrosis Foundation?

Michael Boyle, MDSummary. Michael Boyle, MD, is president and chief executive officer of the Cystic Fibrosis Foundation. Dr. Boyle is internationally known for his clinical research and for his work to improve care for adults with CF.

How much money has the Cystic Fibrosis Foundation raised?

The Foundation and community held more than 950 virtual events and raised more than $73 million for the fight against CF, demonstrating the CF community's talents and commitment to connecting with one another and fueling our shared mission as they weathered the pandemic.

What is the ADR for 2019?

Due to unforeseen administrative issues, the National Institute of Diabetes and Digestive and Kidney Diseases ( NIDDK) has decided that the 2019 edition of the USRDS Annual Data Report (ADR) will be abbreviated. The 2019 ADR, produced by the University of Michigan contractors, consists of a summary chapter and a shortened number ...

How to view USRDS 2019?

To view, you may click on the title of each section or download all the sections to your computer.