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

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

5. NHR Steering Group

6. Outcomes
Treatment
Patient
Outcome?

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 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