Haemoglobinopathies
Scope
This Lead and Inform Clinical Reference Group (CRG) covers sickle cell disease, thalassaemia and other very rare anaemias requiring lifelong transfusion and chelation. Haemoglobinopathies are complex disorders which although often grouped together and managed by the same specialist team, have distinct clinical manifestations and treatments.
Membership
- Dr Subarna Chakravorty, National Specialty Advisor (Chair)
- Dr Banu Kaya, Clinical Member
- Dr Elizabeth Rhodes, Clinical Member
- Dr Sarah Nicolle, Clinical Member
- Dr Sanne Lugthart, Clinical Member
- Dr John Grainger, Clinical Member
- Dr Farrukh Shah, Clinical Member
- Dr Amy Webster, Clinical Member
- Professor Baba Inusa, Affiliate Member, National Haemoglobinopathy Panel
- Dr Sara Trompeter, Affiliate Member, NHS Blood and Transplant
- Dr Noémi Roy, Affiliate Member, National Haemoglobinopathy Registry
- Dr Rachel Kesse-Adu, Affiliate Member, UK Forum for Haemoglobin Disorders
- Funmi Dasaolu, Patient and Public Voice Representative
- Roanna Maharaj, Patient and Public Voice Representative
- Zoe Hamilton, Lead Commissioner
Products
A key part of the CRG’s work is the delivery of the ‘products’ of commissioning. These are the tools used by the commissioners to contract services on an annual basis.
Specialised haemoglobinopathy services
- Sickle cell disease – Haemoglobinopathies coordinating centres (HCCs)
- Thalassemia – Haemoglobinopathies coordinating centres (HCCs)
- National haemoglobinopathy panel (NHP)
- Specialist haemoglobinopathies teams (SHTs)
Service specifications
Service specifications are important in clearly defining the standards of care expected from organisations funded by NHS England to provide specialised care. The specifications have been developed by specialised clinicians, commissioners, expert patients and public health representatives to describe both core and developmental service standards. Core standards are those that all funded providers should be able to demonstrate, with developmental standards being those which may require further changes in practice over time to provide excellence in the field.
The following service specifications fall within the scope of this CRG:
Clinical commissioning polices
- Allogeneic haematopoietic stem cell transplantation (Allo-HSCT) for adult transfusion dependent thalassaemia
- Allogeneic haematopoietic stem cell transplantation for adults with sickle cell disease
- Rituximab and eculizumab for the prevention and management of delayed haemolytic transfusion reactions and hyperhaemolysis in patients with haemoglobinopathies
- Treatment of iron overload for transfused and non-transfused patients with chronic inherited anaemias
Clinical commissioning statements
- Plerixafor use in patients with sickle cell disease (SCD) who are eligible for treatment with exagamglogene autotemcel (ages 12 years and above)
- Plerixafor use in patients with transfusion-dependent beta-thalassaemia who are eligible for treatment with exagamglogene autotemcel (ages 12 years and above)
Get involved
If you are interested in the work of the haemoglobinopathies CRG or its NPOC, you can register as a stakeholder.
For details on our latest consultations please visit the NHS England consultation hub.
Get in contact
For any questions or queries relating to the work of the haemoglobinopathies CRG or its NPOC, please contact: england.npoc-bloodandinfection@nhs.net