Recent European surveys by CF Europei and studies based on the European CF Patient Registry revealed nearly 50.000 people living with CF in Europe, but this is probably an underestimate due to lower access to diagnosis and care in newer EU countries and eastern Europe.
In the United States, approximately 30,000 individuals have CF; most are diagnosed by six months of age. Canada has approximately 3,000 citizens with CF.
Although technically a rare disease, cystic fibrosis is ranked as one of the most widespread life-shortening genetic diseases. It is most common among nations in the Western world. Approximately 1 in 25 people of European descent, and one in 30 of Caucasian Americans, is a carrier of a cystic fibrosis mutation. Although CF is less common in these groups, approximately 1 in 46 Hispanics, 1 in 65 Africans and 1 in 90 Asians carry at least one abnormal CFTR gene.An exception in Europe is Finland, where only one in 80 people carry a CF mutation.
In the United States, 1 in 4,000 children are born with CF. In 1997, about 1 in 3,300 caucasian children in the United States was born with cystic fibrosis. In contrast, only 1 in 15,000 African American children suffered from cystic fibrosis, and in Asian Americans the rate was even lower at 1 in 32,000.
ΔF508 is the most common CF mutation worldwide, but the frequency depends on the country. The frequency of ΔF508 carriers has been estimated to be 1:200 in northern Sweden, 1:143 in Lithuania, and 1:38 in Denmark.  ΔF508 does occur in Finland, but it is a minority allele there. Cystic fibrosis is diagnosed in males and females equally.
For reasons that remain unclear, data has shown that males tend to have a longer life expectancy than females, however recent studies suggest this gender gap may no longer exist perhaps due to improvements in health care facilities, while a recent study from Ireland identified a link between the female hormone oestrogen and worse outcomes in CF.
Many countries have national CF patient registries which can be consulted via the local association's websites.
The purpose of the European ECFS Patient Registry is to measure, survey and compare aspects of cystic fibrosis and its treatment in Europe, thereby encouraging new standards of dealing with the disease, to provide data for epidemiological research and to identify special patient groups suitable for multi-centre trials. For more info about the European Patient registry look at the article about this registry under Research.
More than 40 years ago, the CF Foundation created the American Cystic Fibrosis Patient Registry to track the health of people with CF in the United States. The information in this registry allows caregivers and researchers to identify new health trends, recognize the most effective treatments and design clinical trials for potential therapies. The registry anonymously reports patient data from more than 26,000 people with CF who receive care at CFF accredited centers. The information collected includes:
By providing data through the patient registry, the Foundation educates and hopes to foster stronger partnerships among people with CF, their families and care center staff.
Source indication: Wikipedia - http://en.wikipedia.org/wiki/Cystic_fibrosis
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