A preliminary assessment of the potential impact of rare diseases on the NHS

Read the full evaluation 

Date of publication: November 2018

Key points
This project was established to perform a preliminary investigation into the potential cost and resource impact of RD on the NHS, with a focus on the time period up to diagnosis, using reported real-world hospital datasets (HES data) in England.


The analysis was undertaken by Julia Wilkins (Analytics Lead, ICHP) and Matthew O’Connell (Health Informatics Analyst, Harvey Walsh and ICHP) and the report was developed in collaboration with Ruth Slater (Medical Communications Lead, ICHP).

Statistical Derived Reports from publically reported Hospital Episode Statistics (HES) for the period March – April 2017/18 were provided by Harvey Walsh Ltd under license from NHS Digital through the Data Sharing Agreement DARS-NIC-05934-M7V9K.

The project was fully funded by Mendelian.