Publication, Part of Rare Condition Registration Statistics
Rare Condition Registration Statistics updated to 2022
Summary
This publication summarises information about rare conditions using data from the National Disease Registration Service (NDRS), part of NHS England.
Currently, this publication focuses on prevalence estimates of these 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.
If you would like to provide feedback on how this publication can be developed in future to meet your needs, please complete our user engagement survey (see the 'Providing feedback' section below).
Highlights
What’s changed in this release
For the first time, this publication is designated as Official Statistics in Development, in line with the Code of Practice for Official Statistics. This means that this is new information and that you can expect the publication to develop over time. We welcome your feedback as part of this development.
Prevalence estimates have been updated for 28 conditions previously published. For the full list of updated conditions, see the section ‘More information about rare conditions’.
65 conditions have been added to this release that have not previously been published. For the full list of updated conditions, see the section ‘More information about rare conditions’.
Numerators and denominators are included alongside the prevalence estimates.
Resources
Last edited: 16 June 2025 11:56 am