Rare condition registration statistics

The rare condition registration statistics focus on prevalence estimates of rare conditions as a means of reporting basic epidemiological information to a range of users. Over time, it will be expanded to cover other relevant information where possible, such as new statistics and additional conditions. The duration of the observed data varies with the disease or condition type. Data are presented for England as a whole only, due to the rare nature of many of the conditions.

Acknowledgements

This work uses data that has been provided by patients and also collected by the NHS as part of their care and support. The data are collated, maintained and quality assured by the National Disease Registration Service, which is part of NHS England.

Understanding the size of the population living with and beyond the diagnosis of a disease or condition at a point in time can support service planning for the delivery of local health and social care services, quantify the ‘burden’ of disease or number of children living with a congenital anomaly in an area or population. Therefore this could help determine the number of people who may have unmet health needs that could potentially benefit from new treatment interventions. Data are only currently presented at a national level due to the small numbers involved and the experimental nature of this release.

Find out more about the rare disease data set.

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