National Haemoglobinopathy Register

1. National Haemoglobinopathy Register NHR Training Introduction

2. Thank you for supporting the NHR

3. NHR is a registry for all Sickle & Thalassaemia patients in England with central data collection through a national IT network connected to all Haemoglobinopathy centres support@mdsas.com

4. Clinical Service Clinical Service NHS Funds Clinical Service Sickle Cell & Thalassaemia Clinical Service Clinical Service

5. NHR Steering Group

6. Outcomes Treatment Outcome? Patient

7. Completion of the NHR is a requirement of the service specification, backed by commissioners and overseen by the Clinical Reference Group (CRG)

8. NHR Components • Patient Registrations • Serious Events • Annual Review • Patient Card • National Information Service • Public website • Patient Survey • TCD Quality Assurance • Annual Report

9. National Network NHS Network NHR Server Trusts Data Entry System NHR Database Information Service Trusts DH Commissioners Public NHR Website

10. Annual Review • Essential to maintain an accurate and up to date registry • Good practice – particularly UCLH, Guys, Kings, Manchester • Usability feedback from sites reviewed at steering group • Dataset published on NHR Public Website

11. Annual Review • A national standard for annual reviews for consistency of care • Allow centres to record and retrieve patient information • Identify patients lost to follow-up • Better manage patient care with functionality for care-planning • Will always be updated to reflect clinical service requirements

12. NHR – improving patient care • Outcome data to inform decisions on patient care • Service planning and improvement • Clinical management of patients • Research – UK Forum Research Committee • Assist the blood transfusion service in ensuring availability of blood • Supporting the screening programme ensuring correct care provided • Quality Assurance, Patient safety and Parliamentary work

13. NHR Data Review

14. The Registry