National Haemoglobinopathy Register NHR Training Introduction

Thank you for supporting the NHR

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

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

NHR Steering Group

Outcomes Treatment Patient Outcome?

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

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

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

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

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

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

NHR Data Review

The Registry