February 2023
Mitapivat Withdrawal
The Department for Health & Social Care has asked NICE to carry out a Single Technology Appraisal of Mitapivat for treating pyruvate kinase deficiency. However, the appraisal for this is now suspended.
July 2022
Red Cell News is Out!
Issue number 18 of the The South East London South East HCC/STSTN Newsletter is out as out and full of good news, new faces and super helpful resources.
June 2022
Guidelines
Our expert-led subgroups have been working hard with services, patients, therapy providers, and policy makers to promote harmonised, safe and effective novel and/or updated treatments for our haemoglobinopathy patients.
One way of doing this is our guidelines for implementation of various practices.
In Remembrance - KOF (Professor Kwaku Ohene-Frempong
With profound sadness, we share news that we have lost a world-renowned leader in the field Sickle Cell Disease. On Saturday 7th May 2022 in the USA, Prof Kwaku Ohene-Frempong, affectionally known a “KOF”, passed away, following a short and dignified fight against an aggressive cancer. While the loss of his presence and humanity is greatly mourned, his far-reaching contributions to Sickle Cell Disease will be deeply cherished.
For more information and an opportunity to share your tributes, click below.
Crizanlizumab for preventing sickle cell crises in Sickle Cell Disease
05/10/2021
The National Institute for Health and Care have published an appraisal recommending Crizanlizumab as an option for preventing recurrent sickle cell crises (vaso-occlusive crises) in people aged 16 or over with sickle cell disease only if the conditions in the managed access agreement are followed.
MARAC Statement: Temporary Suspension of Clinical Trials
03/03/2021
The Sickle Cell Disease Association of America Medical and Research Advisory Committee (MARAC) has issued a statement regarding the temporary suspension of bluebird clinical trials of LentiGlobin Gene Therapy for Sickle Cell Disease and the pause of all commercial use of bluebird bio European gene therapy.
Sickle Cell and Thalassaemia Counselling Knowledge and Skills
01/02/2021
The Public Health England Sickle Cell and Thalassaemia Screening Programme has published information and resources for health professionals who provide counselling for people at risk of having a baby with sickle cell or thalassaemia.
STSTN Presents: ‘Paediatric Sickle Cell Emergencies’, by Dr Maria PELIDIS, Consultant Paediatric Haematologist, London Evelina Children’s Hospital
20/01/2021
Click below to view the latest educational video produced by South London Sickle Cell and Thalassaemia Network and presented by NHP Member Dr Maria PELIDIS. The full archive of STSN videos can also be found on their main YouTube page.
Lecture Series: ‘Sickle Cell and the Social Sciences: Health, Racism, and Disablement’, by Professor Simon Dyson
Professor Simon Dyson of Unit for the Social Study of Thalassaemia and Sickle Cell (TAS) at De Montfort University has published a free online lecture series based on his new book. The lectures are particularly aimed at university students interested in sickle cell disorders. You can view the lectures via the educational resources page.
Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19
21/12/2020
The guidance has been updated in light of the move to a Tier 4 lockdown for much of the UK population resulting from the recent rise in COVID-19 cases and admissions.
STSTN Newsletter
10/12/2020
The South Thames Sickle Cell and Thalassaemia have published their latest newsletter, with content including how COVID-19 has changed care for patients and its impact on sickle cell community services, advice for looking after wellbeing, and the Patient Zone. Click the link below to read the newsletter.
COVID-19 guidance for Clinically Extremely Vulnerable People
02/12/2020
The UK Thalassaemia Society has published guidance for clinically extremely vulnerable people in light of the end of the second national lockdown in the UK and the return to a Tier system. Click the link below to view the guidance.
STSTN YouTube channel
11/11/2020
The South Thames Sickle Cell and Thalassaemia Network (STSTN) now has a YouTube channel containing educational videos for both professionals and patients. Click the link to go to their channel.
NHSE policy on rituximab and eculizumab
30/09/2020
The NHSE has now approved a policy on the use of rituximab and eculizumab for the prevention and treatment of DHTR and hyperhaemolysis. Click the link below to go to the policy.