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Genetics Home Reference: your guide to understanding genetic conditions  
 
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What information about a genetic condition can statistics provide?

Statistical data can provide general information about how common a condition is, how many people have the condition, or how likely it is that a person will develop the condition. Statistics are not personalized, however—they offer estimates based on groups of people. By taking into account a person's family history, medical history, and other factors, a genetics professional can help interpret what statistics mean for a particular patient.

Some statistical terms are commonly used when describing genetic conditions and other disorders. These terms include:

Statistical termDescriptionExamples
IncidenceThe incidence of a gene mutation or a genetic disorder is the number of people who are born with the mutation or disorder in a specified group per year. Incidence is often written in the form “1 in [a number]” or as a total number of live births.About 1 in 200,000 people in the United States are born with syndrome A each year. An estimated 15,000 infants with syndrome B were born last year worldwide.
PrevalenceThe prevalence of a gene mutation or a genetic disorder is the total number of people of any age who have the mutation or disorder in a specified group at a given time. This includes both newly diagnosed and pre-existing cases. Prevalence is often written in the form “1 in [a number]” or as a total number of people who have a condition. Approximately 1 in 100,000 people in the United States have syndrome A at the present time. About 100,000 children worldwide currently have syndrome B.
MortalityMortality is the number of deaths from a particular disorder occurring in a specified group per year. Mortality is usually expressed as a total number of deaths.An estimated 12,000 people worldwide died from syndrome C in 2002.
Lifetime riskLifetime risk is the average risk of developing a particular disorder at some point during a lifetime. Lifetime risk is often written as a percentage or as “1 in [a number].” It is important to remember that the risk per year or per decade is much lower than the lifetime risk. In addition, other factors may increase or decrease a person's risk as compared with the average.Approximately 1 percent of people in the United States develop disorder D during their lifetimes. The lifetime risk of developing disorder D is 1 in 100.

For more information about interpreting statistics:

The National Alliance of Breast Cancer Organizations (NABCO) offers a fact sheet titled Comments on Putting Cancer Statistics in ContextThis link leads to a site outside Genetics Home Reference.. This resource lists the uses and limitations of cancer statistics. Although the fact sheet focuses on cancer, information about interpreting medical statistics can also apply to other disorders.


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Published: October 8, 2004

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