Prevalence and Incidence of Holoprosencephaly

Holoprosencephaly: Rare Disease

Holoprosencephaly is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Holoprosencephaly, or a subtype of Holoprosencephaly, affects less than 200,000 people in the US population.

Ophanet, who are a consortium of European partners, currently defines a condition rare when if affects 1 person per 2,000. They list Holoprosencephaly as a "rare disease". More information about Holoprosencephaly is available from Orphanet

Incidence (annual) of Holoprosencephaly:

2.38 per 10,000 births in the UK 2002 for arhinencephaly/holprosencephaly (University of Ulster, 2003) ... see also overview of Holoprosencephaly.

Incidence Rate:

approx 1 in 285,714 or 0.00% or 951 people in USA [Source statistic for calcuation: "2.38 per 10,000 births in the UK 2002 for arhinencephaly/holprosencephaly (University of Ulster, 2003)" -- see also general information about data sources]

Incidence extrapolations for USA for Holoprosencephaly:

951 per year, 79 per month, 18 per week, 2 per day, 0 per hour, 0 per minute, 0 per second. [Source statistic for calculation: "2.38 per 10,000 births in the UK 2002 for arhinencephaly/holprosencephaly (University of Ulster, 2003)" -- see also general information about data sources]

Incidence statistics for Holoprosencephaly:

The following statistics relate to the incidence of Holoprosencephaly:

• 3 infants were born alive with arhinencephaly or holprosencephaly in the UK 2002 (University of Ulster, 2003)
• 1 fetal deaths or still births occurred due to arhinencephaly or holprosencephaly in the UK 2002 (University of Ulster, 2003)
• 3 cases of induced abortions occurred following prenatal diagnosis of arhinencephaly or holprosencephaly in the UK 2002 (University of Ulster, 2003)
• Arhinencephaly or holprosencephaly occurred in 2.38 per 10,000 births in the UK 2002 (University of Ulster, 2003)
• more statistics...»

About prevalence and incidence statistics:

The term 'prevalence' of Holoprosencephaly usually refers to the estimated population of people who are managing Holoprosencephaly at any given time. The term 'incidence' of Holoprosencephaly refers to the annual diagnosis rate, or the number of new cases of Holoprosencephaly diagnosed each year. Hence, these two statistics types can differ: a short-lived disease like flu can have high annual incidence but low prevalence, but a life-long disease like diabetes has a low annual incidence but high prevalence. For more information see about prevalence and incidence statistics.

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