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Dear Colleagues, The National Congenital Anomaly & Rare Disease Registration Service (NCARDRS) records details of those people with congenital anomalies and rare diseases across England. NCARDRS is authorised under Section 251 of the NHS Act 2006 to collect personal information without individual consent, and details of our current approval can be found on the Health Research Authority website, CAG reference CAG 10-02(d)/2015. We have permission to collect identifiable data about suspected and confirmed congenital anomaly and rare disease cases. Further information about NCARDRS can be found here: www.gov.uk/phe/ncardrs. The rare diseases data collection is in its early stages and we are looking into ways that this data can be collected from different sources. We are currently working on a project to identify people with Wilson’s Disease in England. The work involves testing methods to identify people with Wilson’s Disease in routinely collected data, and also collecting a small amount of information about diagnosis and treatment. One of our goals is to provide a national prevalence rate for Wilson’s Disease, this will support commissioners when making healthcare decisions. We will also see if we can use the methods used in this study for other types of rare disease. The Wilson’s Disease Special Interest Group (WD-SIG), the British Association of the Study of the Liver and the British Society of Gastroenterology all support this project. One data source we are currently looking into using is Hospital Episode Statistics (HES) data. The HES admitted patient care data has been interrogated to find details of patients who have ICD10 code E83.0 - disorders of copper metabolism (including Wilson’s disease) referenced in their episode diagnosis codes over a 5 year period. To confirm these cases, our next step is to send case lists of patients to Trusts, so that they can check the information extracted from HES against case notes. We have identified a number of clinicians who have agreed to take part in the work and are looking for volunteers to check information at a few remaining Trusts, these Trusts are listed below. Please note that NCARDRS has data sharing agreements in place with each of these Trusts, and we are happy to share these with Trust contacts for information. If you or a colleague would be interested in being a part of this project and checking records at your Trust, or if you would like some further information, please let me know. BASILDON AND THURROCK UNIVERSITY HOSPITALS NHS FOUNDATION TRUST CALDERDALE AND HUDDERSFIELD NHS FOUNDATION TRUST CHESTERFIELD ROYAL HOSPITAL NHS FOUNDATION TRUST COLCHESTER HOSPITAL UNIVERSITY NHS FOUNDATION TRUST COUNTESS OF CHESTER HOSPITAL NHS FOUNDATION TRUST DONCASTER AND BASSETLAW HOSPITALS NHS FOUNDATION TRUST EAST AND NORTH HERTFORDSHIRE NHS TRUST EPSOM AND ST HELIER UNIVERSITY HOSPITALS NHS TRUST HAMPSHIRE HOSPITALS NHS FOUNDATION TRUST HARROGATE AND DISTRICT NHS FOUNDATION TRUST HEART OF ENGLAND NHS FOUNDATION TRUST LONDON NORTH WEST HEALTHCARE NHS TRUST MID YORKSHIRE HOSPITALS NHS TRUST NORTH BRISTOL NHS TRUST NORTH MIDDLESEX UNIVERSITY HOSPITAL NHS TRUST ST HELENS AND KNOWSLEY HOSPITALS NHS TRUST THE DUDLEY GROUP NHS FOUNDATION TRUST THE ROTHERHAM NHS FOUNDATION TRUST THE WALTON CENTRE NHS FOUNDATION TRUST UNIVERSITY HOSPITALS OF NORTH MIDLANDS NHS TRUST WEST HERTFORDSHIRE HOSPITALS NHS TRUST WIRRAL UNIVERSITY TEACHING HOSPITAL NHS FOUNDATION TRUST WYE VALLEY NHS TRUST Kind Regards, Jeanette Aston, NCARDRS Rare Disease Data Liaison ------ACB discussion List Information-------- This is an open discussion list for the academic and clinical community working in clinical biochemistry. Please note, archived messages are public and can be viewed via the internet. Views expressed are those of the individual and they are responsible for all message content. ACB Web Site http://www.acb.org.uk Green Laboratories Work http://www.laboratorymedicine.nhs.uk List Archives http://www.jiscmail.ac.uk/lists/ACB-CLIN-CHEM-GEN.html List Instructions (How to leave etc.) http://www.jiscmail.ac.uk/