Useful Links

The National Haemoglobinopathy Registry (NHR) is a database of patients with red cell disorders (mainly sickle cell disease and thalassaemia major) living in the UK. This new database collects data which is required by the Department of Health from haemoglobinopathy centres. The central aim of the registry is to improve patient care.

NHR registered users (NHS network only) available here.

The development of the resource has been funded since March 1997 by grants from the Wellcome Trust to Professors Bernadette Modell and David Ingram to investigate the viability informatics approaches to providing genetic information both to health workers and to affected individuals.

The Brent Sickle Cell and Thalassaemia Centre offers a wide range of services to communities with, or 'at risk' of, sickle cell, thalassaemia, G6PD, and other genetically inherited conditions of haemoglobin.  The Centre was the first to be established in the UK, in 1979, and is an important part of the Haematology Department at Central Middlesex Hospital.  It continues to play a major role in developing client sensitive, innovative, research-based services.  This has earned the Centre a reputation as a leader in this specialist field.

The British Committee for Standards in Haematology (BCSH) is a sub-committee of the British Society for Haematology.  The primary purpose of the BCSH is to provide haematologists with up-to-date advice on the diagnosis and treatment of haematological disease by the production of evidence-based guidelines.

To try to alleviate some of the pressure on public health services, the future of the NHS should not be that of a passive patient. If we can encourage people to take responsibility for their own health needs and provide them with the skills and knowledge to take control of their conditions(s), this would allow resources to be better targeted.

The national and professional organisation for counsellors and other professionals is dedicated to providing a service and support for those at risk of sickle cell, thalassaemia and related conditions. Their website is currently off-line.

Healthtalkonline, an award-winning charity website, lets you share in other people's experiences of health and illness

NCEPOD's purpose is to assist in maintaining and improving standards of medical and surgical care for the benefit of the public by reviewing the management of patients, by undertaking confidential surveys and research, and by maintaining and improving the quality of patient care and by publishing and generally making available the results of such activities.

Your health, your choices

This website has been developed to provide an important resource for all those working within Primary Care. The site has been developed by The Primary Care Genetics Service for The North of Tyne, in collaboration with The Northern Genetic Service for the region.

It provides information on a range of genetic subjects relevant to Primary Care.  In addition it aims to raise the awareness of the role of the Primary Care Team in the identification, prevention and care of genetic conditions and of inherited factors in the predisposition of common disease such as cancer, ischaemic heart disease and diabetes.

PEGASUS education and training is for health professionals involved in antenatal and newborn screening.

The Royal College of Paediatrics and Child Health is one of the Medical Royal Colleges - the oldest of which was founded in 1505. Like the other colleges, we have a major role in postgraduate medical education and professional standards: setting syllabuses for postgraduate training in paediatrics, overseeing the training, running examinations, organising courses and conferences, issuing guidance and conducting research.

The Sickle Cell Society believes that every sickle cell sufferer has the right to quality care. This can only be achieved if funding is made available to educate health carers and other professionals about the condition. The Society aims to provide this.

This is a multidisciplinary group, open to all who are engaged in providing services for people with haemoglobin disorders.

We hope you find this website a helpful source of information about the Programme Centre’s work in newborn blood spot screening. You will find information about us including our work, who we are and how to contact us.

The incidence of thalassaemia trait varies greatly from country to country. It's extremely widespread and occurs in a line extending through the Mediterranean, the Middle East, the Indian sub-continent and through out South East Asia, in a region including Southern China, Thailand, the Malay Peninsula and many of the islands.

The unit aims are:

• To undertake social research on issues of relevance to sickle cell anaemia and thalassaemia
• To provide educational opportunities for those wishing to undertake social studies on thalassaemia or sickle cell within higher education
• To provide consultancy in areas such as education, social services, housing, employment, insurance, health service provision in order to work towards ending discrimination against those living with sickle cell anaemia or thalassaemia
• To provide a gateway to other organizations around the world concerned with thalassaemia or sickle cell anaemia

WoMan Being Concern's main mission is to mobilise the grassroot communities towards achieveing sustainable development in Africa as well as other parts of the world where there is need to improve the quality of life of disadvantaged people.