Haemoglobinopathy Coordinating Centre

What is a Haemoglobinopathy Coordinating Centre (HCC)?

We want to make sure that everyone with sickle cell, thalassaemia, or rare anaemias can access the best possible care, no matter where they live.

The Haemoglobinopathy Coordinating Centre (HCC), based at The Royal London Hospital, is a specialist centre for thalassaemia, rare anaemias, and sickle cell anaemia.

The HCC has been designated as a specialist treatment hub, responsible for coordinating and improving access to services and expertise. Its goal is to ensure better outcomes for patients across east London, Essex, southeast London, and the southeast of England. The HCC works in partnership with Specialist Haemoglobinopathy Teams (SHTs) and local hospitals to achieve this.

We also contribute to the UK National Haemoglobinopathy Panel — a national team of experts from HCCs across the UK. Part of our role is to make sure all patients are registered with the National Haemoglobinopathy Registry, which helps ensure consistent, high-quality care across the country.

For patients and families

What is the role of the specialist haemoglobinopathy team (SHT)?  

This is your specialist hospital which will deliver and coordinate care for patients living with sickle cell, thalassaemia and rare anaemias. They will work closely with the HCC teams.  

For our specialist centre, the Royal London Hospital, please follow the links below: 

Patient information leaflets 

Please do not hesitate to contact your specialist nurse or consultant to discuss things that you do not understand. 

Updates on new treatments 

There are several new treatments for sickle cell, thalassaemia and rare anaemias which are going through discussions to try and make them available in England. 

Accessing support

We are participating in a pilot program aimed at helping sickle cell patients access services closer to home.

If you'd like access to the following, please reach out to your sickle cell or thalassaemia care team:

  • Support with symptom management and monitoring
  • Education and guidance to help you better understand your condition
  • Psychological and wellbeing support
  • Health-related adjustments
  • Physiotherapy, exercise, and rehabilitation support
  • Medication and pain management

Information for professionals

We want to work with other professionals to ensure that patients receive the right care. If you would like to refer a patient to our centre please read our criteria for guidance:

Multidisciplinary meetings 

This is a chance for the network to discuss cases together monthly. MDT meetings occur every month via Microsoft Teams and the link will be sent out to clinicians before the meeting.

  • Sickle cell for adults — first Monday of every month 
  • Sickle cell for paediatrics — fourth Monday of every month
  • Thalassemia adults and paediatrics — second Monday of every month 

Referrals for the MDT should be sent by a clinician to our team by 5pm on the Friday before. This will enable our consultants to review the referral/s prior. 

Research

This is a very exciting time for sickle cell, thalassaemia and rare anaemias. There are several trials running across the network and we have listed these below with some details. 

For patients, please get in touch with your specialist centre for more details. 

For clinicians, please ask the HCC for more details or attend the MDT for further updates. 

For more information on any research listed please email us.