Resources for the General Public
General Documents for Professionals
Resources for Professionals
Research & Development Reports
Workshop Reports
Annual Report
The Newsletter of the NHS Sickle Cell and Thalassaemia Screening Programme

Resources for the General Public

Please follow links below:

GP Poster - Pregnant? Planning a baby?

Results of Newborn Blood-Spot screening - Sickle Cell carrier

Results of Newborn Blood-Spot screening - Unusual haemoglobin carrier

A Parent's Guide - Care and Management of Your Child with Sickle Cell Disease (June 2007)

DIPEx - Personal Experiences of Screening

Antenatal (pre-screening) leaflet - it explains why we offer the test and helps you decide whether to accept it

Presentation about Sickle Cell and Thalassaemia by Dr Nicola Bienz

General Documents for Professionals

Please follow links below:

Exjade Report

NICE - Antenatal Care Guideline

Sickle Cell Diseases in Childhood - Standard and Guidelines for Clinical Care

Sickle Cell and Thalassaemia Screening Programme Standards

Handbook for Laboratories

Laboratory Newsletter

Family Origin Questionnaire

Antenatal lab based return for high and low prevalence trusts

Newborn laboratory return

Accessible Information Report by Cynthia Gill

Risk Card

Information for Community Practitioners e-leaflet - (May '08)

Information for Midwives e-leaflet - (May '08)

Screening Practitioner Job Description

Review of Resources supporting Haemoglobinopathy Screening Programmes in England

Genetic Counselling Services Report 2006

US Guidelines Publication

Resources for Professionals

Please follow links below:

Mapping Reports

Regional Specialised Commissioning Group Reports

Research & Development Reports

Please follow links below:

Maternity delivery data

Survey of Haemoglobinopathy Screening Policy & Practice in England

Secondary Review of Existing Information in Relation to the Ethnic Question

Report of the Ethnic Question and Antenatal Screeing for Sickle Cell/ Thalassaemia: Use of Maps in Antenatal Screening for Sickle Cell/ Thalassaemia

Evaluation of the 'Family Origin Questionnaire'

EQUANS report by Simon M Dyson

Health Committee Enquiry: Health Inequalities

Workshop Reports

Please follow links below:

Clinical Workshop (February 2002)

Technical Workshop (November 2001)

International Workshop on Haemoglobinopathy Screening (July 2001)

'Ethnic' Question Workshop (May 2001)

Annual Report

Please follow links below:

Consolidated annual reports: 2004 to 2007

Annual Report 2003/4

Annual Report 2002/3

Resources for the General Public:

Results of Newborn Blood-Spot screening Carrier of a sickle cell gene – sometimes called trait Hb AS

(September 2007) Newborn Blood-Spot screening tests have shown that your baby carries a gene for sickle cell. Your baby does not have sickle cell disease and does not need medical treatment. However, it is important that you read this leaflet. It contains information about what this result may mean in the future for your baby and for your family.

Leaflet in pdf format is available to view or print from the link bellow:

Newborn Sickle Cell carrier leaflet

Results of Newborn Blood-Spot screening Carrier of a gene for an unusual haemoglobin – sometimes called trait Hb AC, Hb AD, Hb AOArab, Hb AE, Hb A Lepore.

(September 2007) Newborn Blood-Spot screening tests have shown that your baby is a carrier of a gene that produces an unusual haemoglobin. Your baby does not have a haemoglobin disorder and does not need any medical treatment. The unusual gene will not cause any health problems. However, it is important that you read this leaflet. It contains information about what this result means for your baby and for your family.

Leaflet in pdf format is available to view or print from the link bellow:

Newborn unusual haemoglobin carrier leaflet

DIPEx

(Oct 2006)

The DIPEx has devloped a website for sickle cell and thalassaemia screening, which has a bank of personal experiences of screening in written, audio and video format. A flyer with more information is available to view or print from the link:

DIPEx Flyer

Or you can view the website at the following link:

DIPEx Website

Antenatal Leaflet

Antenatal (pre-screening) information leaflets for pregnant women is available to view, listen or print from links bellow:

Pre-screening Leaflet - English

• Italian

• French

Large print pre-screening leaflet

Easy Read pre-screening leaflet

Sound file in mp3 format of the pre-screening leaflet (mono, file size = 5.9MB)

Sound file in mp3 format of the pre-screening leaflet (stereo, file size = 11.8MB)

(Please note that these documents contain the same information and that sound files are relatively big and could result in very long downloads.)

Presentation by Dr Nicola Bienz

An electronic version of the presentation by Dr Nicola Bienz about Sickle Cell and Thalassaemia disease presented at South-East regional meeting is available to view or print from the link bellow:

Overview of Sickle Cell and Thalassaemia disease

General Documents for Professionals:

Exjade Report

This draft report was considered by the NHS Sickle Cell and Thalassaemia Screening Programme in 2007. It was funded by the NIHR HTA Programme as project number 06/12/01 and is published in Health Technology Assessment. See the project’s webpage at (www.hta.ac.uk/ http://www.hta.ac.uk/1632) for further project information.

Deferasirox for the treatment of iron overload associated with regular blood transfusions (transfusional hemosiderosis) in patients suffering with chronic anaemia (06/12)
A systematic review & economic evaluation

An electronic version of the document in pdf format is available from:

Exjade Report

NICE - Antenatal Clinical Care Guideline

(March 2008)

An electronic version of the National Institute for Health and Clinical Exellence Antenatal Clinical Guideline in pdf or MS Word format is available from:

NICE Antenatal Clinical Guideline

Recommended wording by the NHS Sickle Cell and Thalassaeima Screening Programe in pdf format is available from:

Recommended wording

Sickle Cell Diseases in Childhood - Standard and Guidelines for Clinical Care

(Oct 2006)

An electronic version of the Sickle Cell Diseases in Childhood - Standard and Guidelines for Clinical Care in pdf format is available as a summary or full document to view or print from the links bellow:

Summary Guidelines for Clinical Care

Full Document - Guidelines for Clinical Care

Family Origin Questionnaire

(Aug 2007)

Please note the ordering process for the FOQ, which can befound on page 2 of the questionnaire.

An electronic version of the Family Origin Questionnaire in pdf format is available to view or print from the link bellow:

Family Origin Questionnaire

Accessible Information to Support Antenatal & Newborn Screening Programmes by Cynthia Gill

(Jan 2008)

A review of requirements and plans for developing of written information; language materials; alternative format resources & decision aids.

An electronic version of the full report and the executive summary in pdf format is available to view or print from the links bellow:

Executive Summary (311KB)

Accessible Information Report (2.92MB)

Good Practice Tips for Producing Accessible Patient Information (1.22MB)

Risk card for midwives

(Oct 2007)

Diagram to show pattern of genetic inheritance for autosomal recessive disorders such as sickle cell disease, cystic fibrosis and thalassaemia.

An electronic version of the chart in pdf format is available to view or print from the link bellow:

Risk Card

Review of Resources supporting Haemoglobinopathy Screening Programmes in England

To support the implementation of the NHS Plan directive for antenatal and neonatal screening programmes, a brief review of the literature and materials available was undertaken. A copy of the report is available from the link bellow:

Resources Review Report

Genetic Counselling Services Report

The final report of the provision of Genetic Counselling Services for Haemoglobinopathy Clients in UK Genetic Centres can be found if you click on the following link:

HB Report 2006
HB Report 2006 Appendix A
HB Report 2006 Appendix B
HB Report 2006 Appendix C
HB Report 2006 Appendix D

US Guidelines Publication

Screening for Hemoglobinopathies in Newborns: Reaffirmation Update for the U.S. Preventive Services Task Force.
This document supports our policies and can is available from the link bellow:

AHRQ Publication No. 07-05104-EF-1

Please note reference 12
The Management of Sickle Cell Disease (from NHLBI)

Resources for Professionals:

Mapping Reports

The aim of the reports was to identify the current care pathway for haemoglobinopathy screening in all acute trusts in England.

Regional Specialised Commissioning Groups briefing on the Roll-out of the Newborn Screening for Sickle Cell disease in England

A copy of the original briefing for the Regional Specialised Commissioning Group can be obtained if you click on Briefing 1 (January 2003).

An updated briefing for April 2003 can be obtained if you click on Briefing 2 (April 2003)

The June 2003 RSCG brief is available here

Research & Development Reports:

Maternity Delivery Data

A document presenting NHS Trusts’ maternity delivery figures, sorted by ethnicity, is available to view or print from the link bellow:

Delivery Data

The report of the survey of haemoglobinopathy screening policy and practice in England (October 2001)

Documents if pdf format are available to view or print from the links bellow:

Executive Summary
Full Report
Commentary on the Implications of the Findings

EQUANS report by Simon Dyson

Documents in pdf format are available to view or print from the links bellow:

Policy Briefing Paper
Final Report Volume 1
Programme Commentary

Health Committee Enquiry: Health Inequalities

The implementation of the NHS Sickle Cell and Thalassaemia Screening Programme has gone some way to reduce health inequalities across England, particularly for minority ethnic groups. The Programme is specifically working to reduce health inequalities in these key areas:

• Improving Access to services
• Reducing Infant Mortality Rates

Report in pdf format is available to view or print from the link bellow:

Health Inequalities Inquiry

The Newsletter of the NHS Sickle Cell and Thalassaemia Screening Programme

Please follow links below:

Edition 1 (Oct 2007) - 4.5MB
Edition 2 (May 2008) - 0.5MB