A quick recap
It’s been a year since we started our blog on our sickle cell research and we have been grateful for the engagement that we have had. Thank you all for being part of our journey. Throughout 2024, we shared updates on our NHS Race and Health Observatory funded project comparing inequalities in sickle cell with cystic fibrosis and haemophilia including preliminary findings, related events, conference presentations and patient engagement work. As our project draws to a close, please stay tuned for the publication of our report on this work very soon. Going forward, we aim to continue to share updates on our other sickle cell related research, patient and public engagement events and other sickle cell related news.
1. Survey
We would like to thank all those who shared and/or took part in our patient engagement survey. We had an incredible response of over 70 people completing our survey. The responses received reflected the challenges faced by many patients with sickle cell, but also included some suggestions of things which could be improved. We are still processing and analysing in more detail all the answers received, and look forward to sharing more on this with you in the coming months.
2. Report of our comparative research
We are submitting our report of our comparative work on inequalities in sickle cell to the NHS Race and Health Observatory and we are currently planning the dissemination of this report. We will let you know as soon as events are starting to be scheduled. In parallel, we will also be publishing findings from our work in several scientific publications to be submitted in the coming months.
3. Gene Therapy approved for sickle cellÂ
This month ended with groundbreaking news as the gene therapy for sickle cell Exa-cel, or Casgevy, was approved by the National Institute for Clinical Excellence (NICE). This news marks an important milestone in sickle cell therapy and we are thrilled to see this life-changing and transformative therapy available to patients on the NHS. Although this is really important, this therapy will only be available to a relatively small number of patients with sickle cell per year. Progress to ensure that all people with sickle cell has access to specialist care and treatments is still very much needed. However, for now, let’s take a moment to celebrate this incredible and monumental progress for people living with sickle cell.
4. Raising sickle cell awarenessÂ
Earlier this month, Rutendo attended a public engagement event at The Healing Church of God in Christ (THCOGIC) in London. Dr Steven Okoli led a talk raising awareness of sickle cell and Rutendo discussed our current and future research on sickle cell with the congregation. It was great to see the congregation’s enthusiasm and motivation to raise awareness of sickle cell.
5. Patient engagement events at Hammersmith hospitalÂ
In February (20th and 27th) and March (6th), Hammersmith hospital will be hosting a series of patient engagement events to learn about sickle cell research funded by Genomics England. The event is open to everyone and patients and carers can learn about how to get involved in the research community. The event will include art exhibitions and workshops, microscope demonstrations and workshops on sickle cell research. Contact Camelia for more information or call her on 02033133175/35708.
6. Focus groups for children’s health study
Researchers at the Institute of Child Health at UCL and Crescent Kids Organisation are conducting focus groups with people with sickle cell to discuss their experiences with the aim to better understand the experience of families with a child with sickle cell to inform their research. The focus groups will be held on 22nd, 28th February and 8th March. Contact ichppp.cares@ucl.ac.uk or sign up on here.