Web Links
- Education resources for health professionals involved in screening
- Information for health professionals to give to patients
- Antenatal and newborn screening programme websites
- Genetics information
- Government and NHS websites
- Parent support organisations and charities
- Government and NHS Policy Documents and Websites
- Links to implementation and policy documents on the Sickle Cell and Thalassaemia Screening Programme Websites
Education resources for health professionals involved in screening
National Screening Committee:
- Continuous Professional Development (CPD) Resources to support the antenatal and newborn screening programmes
- Resource cards for midwives A handy credit card sized resource for midwives to refer to when discussing screening tests with women and their families
- Screening Choices An open learning programme developed to meet the needs of a range of health professionals offering antenatal and newborn care
Sickle Cell and Thalassaemia Screening Programme:
UK Newborn Screening Programme Centre:
- Health Professional Handbook (April 2005): A handbook which offers support to health professionals delivering newborn blood spot screening; outlining national standards, and providing information for health professionals to support them in answering parents' queries
Other:
- Fast Track Training A PowerPoint presentation about sickle cell and thalassaemia
- GP Notebook
- Newborn and 6-8 week infant physical examinations A new resource for health professionals undertaking the newborn and 6-8 week infant physical examination (the NIPE toolbox)
- Skills for Health Developing the competence framework for the various staff groups
Information for health professionals to give to patients
National Screening Committee:
- Screening tests for you and your babyAn A5 booklet which brings together the separate screening information leaflets previously available into one document
- Screening tests for your babyAn A5 booklet about the screening tests offered in the first few weeks after birth
Sickle Cell and Thalassaemia Screening Programme:
- Pre-screening Leaflet: A leaflet describing the screening process for sickle cell and thalassamia
- Pre-screening Leaflet (translated versions)
- Parents guideCare and management of a child with sickle cell or thalassaemia
- Newborn sickle cell carrier leaflet
- Newborn unusual haemoglobin carrier leaflet
UK Newborn Screening Programme Centre:
- Leaflets for parents Various condition specific leaflets to be given to parents prior to screening, available in a range of languages
Other:
- APoGI (Accessible Publishing of Genetic Information) Information to provide to pregnant and newborn carriers to back up counselling support
Antenatal and newborn screening programme websites
- Fetal anomaly
- Newborn hearing
- Sickle cell and thalassaemia
- UK National Screening Committee
- UK Newborn Screening Programme Centre
Genetics information
- Department of Health (genetics)
- Discern Genetics Discern Genetics is a brief questionnaire which provides those using information on genetic testing and screening with a valid and reliable way of assessing quality. It can also be a guide for authors and publishers of information on genetic screening and testing.
- Genetics Interest Group
- Genesense
- Genetics in Family Medicine Online
- National Genetics Education and Development Centre
- NCHPEG National Coalition of Health Professional Education in Genetics
- NOWGEN A centre for genetics in healthcare
- Primary Care Genetics Society
Government and NHS websites
- Health Information Resources (formerly National Electronic Library for Health)
- National Institute for Health and Clinical Excellence
Parent support organisations and charities
- Antenatal Results and Choices
- Cleft Lip and Palate Association
- Children Living with Inherited Metabolic Disorders
- Cystic Fibrosis Trust
- Down's Syndrome Association
- Health Talk Online
- National Society for Phenylketonuria
- Sickle Cell Society
- UK Thalassaemia Society
Government and NHS Policy Documents and Websites
- NHSLA Risk Management Standards for Acute Trusts (2009/10)
- Department of Health: National Service Framework for Children and Young People and maternity Services (March 2007)
- Department of Health: Standards for Better Health (July 2004)
- Genetics White Paper (2003): Our inheritance, our future: realising the potential of genetics in the NHS
- National Collaborating Centre for Women's and Children's Health: Antenatal Care - Routine Care for the Health Pregnant Woman (Updated March 2008)
- NIHR NHS Health Technology Assessment (HTA) Programme The HTA programme works to provide all those who make decisions in the NHS with high-quality information on the costs, effectiveness and broader impact of health care treatments and tests.
- NHS Plan (2000)
Links to implementation and policy documents on the Sickle Cell and Thalassaemia Screening Programme Websites
In this section:
- Web links