Sickle Cell Comparative Research to Inform Policy Project

A quick recap

In January, we shared updates on our NHS RHO comparative research project and a range of upcoming sickle cell events and projects.

What have we been up to?

In February and March, we focused on patient engagement events around sickle cell research and attended an in-person meeting on the latest sickle cell research in the UK and across the world.

1. Sickle Cell Research: A Day of Learning, Art, and Empowerment

Rutendo volunteered in planning and delivering a Genomics England funded sickle cell event which took place on Saturday 29th March at Chelsea Football Club. The event, dedicated to people living with sickle cell and their carers, focused on sickle cell research and how people with lived experience can get involved in research.

The day featured a rich variety of activities such as panel discussions, art exhibitions, music performances and workshops that brought together healthcare professionals, researchers, people living with sickle cell and artists.

2. Patient-centred sickle cell disease management in sub-Saharan African (PACTS) annual meeting

Fred is leading a work package on Mapping and Epidemiology as part of a multi-country project between the UK, Ghana, Nigeria and Zambia. The project is funded by the National Institute of Health & Care Research (NIHR) and led by Professor Imelda Bates at the Liverpool School of Tropical Medicine. Reuben, who works with Fred, presented recent geo-mapped data collected from people with sickle cell attending 6 different health care facilities around Abuja, which will help us to better understand barriers and facilitators of access to healthcare in these settings.

3. Global Congress on Sickle Cell Disease

Scientists and healthcare professionals often meet up in conferences or events to present their latest findings, network and collaborate, and discuss particularly important issues. In early June, many of the international experts working on sickle cell disease will meet in Abuja, Nigeria for the 5th Global Congress on Sickle Cell Disease, organised jointly by the Global Sickle Cell Disease Network (GSCDN) and the Sickle Cell Support Society of Nigeria (SCSSN). Fred will be attending and presentting some of his work. If interested, you can find more information here.

Thank you for reading our blog. See you in May!

Rutendo & Fred

Read February & March – Bridging Patients & Research in full

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 cell 

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 awareness 

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 hospital 

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.

Read January – New Year, New Milestones in full

A quick recap

Last month, we launched our patient engagement survey on inequalities in sickle cell care, discussed our collaborative efforts and the recent Marmot report on racism and health inequalities.

1. Survey

We would like to express our deepest thanks to those who participated and shared our survey. Your incredible response and tremendous effort in disseminating the survey have been invaluable. Our NHS RHO funded project is coming to an end, so we are working hard to write it all up in a report and in scientific publications for wide dissemination. The winner of the virtual voucher will be contacted shortly. Findings from the survey and other parts of our work on inequalities in sickle cell will be published in spring 2025.

2. Imperial Sickle Cell Alliance Meeting

On Friday 6th December, Rutendo attended the Imperial Sickle Cell Alliance meeting were discussions with stakeholders across institutions, organisations and patient groups focused on health, advocacy, education, research and innovation projects. The Alliance is a fairly recent initiative, led by Dr Steven Okoli and Professor Julie Makani, with the aim to unite organizations and campaigns under a single umbrella to have a stronger, more unified voice in advocating for sickle cell patients.

3. The future of Sickle Cell Research survey

Genomics England, the Sickle Cell Society and the James Lind Alliance are conducting a survey to gather insights from people with lived experience of sickle cell, family members, carriers, caregivers, and healthcare professionals. The aim is to identify the most important research areas for sickle cell and how genomics can contribute to improving patient care and outcomes. Have your say for a chance to win a £150 Amazon voucher!

4. Thank you! 

As we wrap up for the year, we thank you for following, supporting and engaging with our blog. We wish you a wonderful festive break and happy new year!

Read December – Thank you and season’s greetings in full

A quick recap

In September, we discussed Sickle Cell Awareness month and the withdrawal of the new sickle cell drug, voxelotor.

What have we been up to?

October, which is Black History Month in the UK, has flown by, but we have been busy as the end of this project, funded by the NHS RHO, is fast approaching.

Throughout October and November, we dedicated our efforts to completing our analysis and to contributing to events highlighting sickle cell research and collaboration. We highlight our patient engagement survey which is now live and aims to gather insights on inequalities in sickle cell from people living with sickle cell or their caregivers. We discuss the Marmot report on structural racism and health inequalities, and highlight the new drafted strategy of the NHS RHO.

1. We need your input!

As part of our comparative research, we have developed a patient engagement survey to gather insights on the inequalities faced by people with sickle cell. The survey is open to adults with sickle cell or carers of individuals with sickle cell living in the UK. It is brief, consisting of just 10 questions, and takes approximately 10 minutes to complete. Participants who complete the survey will have the option to enter a prize draw to win a £50 voucher.

Experiences of people with sickle cell are key to this project, and we encourage you to participate or share the survey with others who may be eligible.

2. Annual Sickle Cell and Thalassaemia Conference (ASCAT)

Rutendo kicked off October by attending the ASCAT conference. She presented findings from our work on inequalities in research and funding related outputs in sickle cell compared with cystic fibrosis and haemophilia.

The conference showcased exciting progress in sickle cell research and there were key discussions around basic care, improving research in countries with limited resources and gene therapy, with a session including presentations given by patients.

3. Sickle Cell Alliance Launch

On Friday 25th October, Fred delivered a presentation on his sickle cell research at the launch event of the Sickle Cell Alliance at Imperial College London hosted by the Imperial Sickle Cell Group and Imperial Enterprise. The alliance seeks to build collaborative partnerships on sickle cell across faculties, institutions, and industries while informing national policy.

4. Racism exacerbates health inequalities

The Marmot Report on structural racism, ethnicity and health inequalities in London

conducted by University College London’s Institute of Health Equity and led by Professor Sir Michael Marmot was published this Autumn. The report found widespread racism in London and highlighted that racism leads to damage to physical and mental health over time. One of the report’s conclusions was that there is potential for more systematic action to tackle racism within organisations and services, in recruitment, employment practices and in service design and delivery.

5. NHS RHO 2024-2027 strategic ambitions

The NHS Race & Health Observatory held an event on Friday 8th November to launch their new strategic ambitions to reduce health inequalities in the UK. This event brought together a diverse audience and offered opportunities to comment on the 7 drafted ambitions of the NHS RHO. You can find more about these here.

Want to contact us?

If you have any questions about this work, feel free to email Rutendo or Fred, or to post a comment.

Read October & November – Time flies in full

A quick recap

Last month, we focused on sickle cell awareness in the media through our comparative work using Google Trends and Netflix’s Supacell.

What have we been up to this month?

This month, we continue our theme on awareness for Sickle Cell Awareness Month and discuss the Pfizer’s withdrawal of Voxeletor which had been approved for NHS funding in May 2024.

1. Sickle cell awareness month

September was National Sickle Cell Awareness Month dedicated to raising awareness and advocacy for sickle cell. You might have been involved by attending sickle cell events, fundraising to support people living with sickle cell, sharing posts on social media and raising awareness with your friends and family.

This month, Fred attended the premiere for the SICKLE docufilm, in which he is featured. The film discusses the history and impact of sickle cell disorder and was presented by the Red Cell Network in partnership with Black Thrive Haringey. It was a great opportunity to hear more about the lived experiences of many patients who attended the event. Further screenings will be announced soon.

Rutendo attended a talk by the Imperial As One network, a network for ethnic minority staff and students at Imperial, where Baba-Jallah Epega, founder of the Richard Coker Foundation and Patrick Ojeer, chairman of the West London Haemoglobinopathy Coordinating Centre Patient and Public Voice group, talked about their experiences in sickle cell advocacy.

2. Pfizer withdraws voxelotor (also called Oxbryta)

On 25th September, Pfizer announced its decision to withdraw voxelotor from all markets worldwide including in the UK. This news, following the withdrawal of another sickle cell treatment, crinzalizumab, in January 2024, is very disappointing especially to people living with sickle cell who have very few treatment options. The Sickle Cell Society published their statement regarding this news.

This decision further highlights the lack of treatment options for people with sickle cell and has certainly been a huge source of frustration for the patient community, as well as haematologists.

3. Conference 

Fred attended the 2024 International Conference on Sickle Cell Disease in Chandrapur, Maharashtra, India. The focus of the conference, organised by the Indian Council of Medical Research, was on the management and prevention of sickle cell. It was also an excellent opportunity to find out more about the National Mission on Sickle Cell Anaemia which was launched by the India Government in the summer 2023. Since then, more than 40 million people have been screening for sickle cell across India.

4. Patient engagement work

As part of our project funded by the NHS Race & Health Observatory, we are planning online workshops and a short survey, developed in collaboration with the Sickle Cell Society and the Ethnicity & Health Unit, to find out about your day-to-day experiences of inequalities in the management of sickle cell.

We want to hear from you. We will explain in our next post how people with sickle cell and/or their carers can participate in our online workshop and survey so keep an eye out for this!

See you next month!

Read September – Sickle Cell Awareness Month in full

A quick recap

Last month, we provided an update on our research and highlighted the national blood shortage.

What have we been up to this month?

This month, we discuss our work examining trends in sickle cell awareness over time and the hit Netflix show Supacell.

1. Using Google trends as a measure of disease awareness

As part of our comparative work on inequalities in sickle cell compared with cystic fibrosis and haemophilia, we are using Google Trends to explore interest in google searches for the three conditions between 2010 and 2023 in the UK. Our results will show how interest in sickle cell has changed over time and which condition is most frequently searched for month by month. These trends may be a proxy for awareness of these conditions within the general public, in parallel with our analysis of hospital admission data and other indicators of inequalities. Spikes in searches may coincide with key events or media highlights related to each condition.

2. Netflix raising awareness for sickle cell

On 27th June this year, the hit show Supacell premiered on Netflix. The superhero drama, created and produced by Andrew Onwubolu (known as Rapman), follows a group of black Londoners who develop superpowers triggered by sickle cell. Rapman told The Guardian that he “wanted [the show] to raise awareness and make people who’ve got sickle cell feel seen and heard”. Since the show’s release there has been spikes in google searches for sickle cell particularly in the week commencing 1st July when the show first held the number one spot on Netflix’s Global Top 10 English language TV shows and gained more than 18 million views in the first few weeks. The show has been important in raising awareness of sickle cell and the UK Sickle Cell Society has welcomed the success of the show and received around a 20% increase in inquiries.

3. September = Sickle Cell Awareness Month

September is Sickle Cell Awareness Month and so there will be a range of events in September to raise awareness of sickle cell. We will share these events throughout the month on our social media pages.

4. ‘SICKLE’ The Docufilm Premiere

In August, Fred – alongside John James from the UK Sickle Cell Society and several patients – has been involved in the recording sections for a documentary firlm (or docufilm) on sickle cell, which will be premiered on Wednesday 11th September. The docufilm, created by The Red Cell Network in partnership with Black Thrive Haringey, focuses on the history and impact of sickle cell. The premiere will be at the Everyman Cinema in Muswell Hill. Free tickets to the event can be obtained here.

5. Patient stories

We want these monthly blog posts to be useful to our readers. Over the last few months, we have had many interactions with people living with sickle cell and their stories are always really powerful. If you would like us to include a short paragraph about your lived experience with sickle cell, please do get in touch. Thank you!

Read August – A focus on awareness in full

A quick recap

Last month, we discussed our efforts in patient engagement and key events that we attended including during World Sickle Cell Day where we shared our research.

What have we been up to this month?

This month, we provide an update on our research, discuss a sickle cell awareness event Rutendo attended, and we highlight the national blood shortage.

1. Research Update

We have been working closely with statistician Professor Alex Bottle who has been providing his expertise in analysing NHS hospital data to explore inequalities in hospital outcomes (including hospitalisations and length of hospital stay) in sickle cell compared to cystic fibrosis and haemophilia. We continue to progress with our literature review summarising existing evidence on inequalities and our work exploring specific indicators of inequality (including research funding) in sickle cell compared to these other conditions. We have started writing these up for publications in scientific journals and will work with patient representatives to produce abstracts in lay terms. Ultimately, all our work will be summarised in a report for the NHS RHO, and in a set of recommendations.

2. Engagement with patients, healthcare professionals and the public

Rutendo attended an event at The Africa Centre hosted by the Sickle Cell Society which focused on raising awareness about sickle cell and the importance of blood donations. There were great discussions among the panellists (including a patient representative and healthcare professionals) and the audience on tackling myths about sickle cell. The conversation covered a wide range of topics ranging from the use of language to blood donations.

3. National blood shortage

Although this is not directly part of our work, blood transfusions are an important intervention in people with sickle cell. Fred is a regular blood donor. It is a small gift that can save lives.

Blood stocks are currently unprecedentedly low. Due to a recent cyber-attack on London hospitals and a high number of unfilled appointments, blood supplies have dropped significantly. The NHS Blood and Transplant has issued an ‘amber alert’ and is urgently asking O negative and O positive donors to give blood.

You can book an appointment online, on the GiveBloodNHS app or call 0300 123 23 23.

4. Stay hydrated in the Heatwave

Finally, staying well hydrated is essential to prevent pain crisis and other complications in sickle cell. As we are experiencing some hot days, please remember to drink plenty of water throughout the day!!!

Rutendo and Fred wish you a great summer! See you next month.

Read July – Data, blood and water! in full

A quick recap

Last month, we focused on collaboration, networking and the sharing of our preliminary findings. We previously mentioned our abstract submission to the Annual Sickle Cell and Thalassaemia (ASCAT) conference. We are pleased to announce that our abstract on ‘Research disparities in sickle cell disease, cystic fibrosis and haemophilia in the UK’ has been accepted for an oral presentation at the ASCAT conference in October 2024.

What have we been up to this month?

This month, we are excited to showcase our efforts in patient engagement and sharing of our work during key events including World Sickle Cell Day and the Imperial Great Exhibition Road Festival.

UK Public & Patient Involvement (PPI)

Rutendo volunteered the Imperial College Great Exhibition Road Festival on Saturday 15th June with the Invisible Warrior project to raise awareness of sickle cell disease. She used this opportunity to discuss her current work on the NHS RHO-funded project.

She had a great time speaking to the public and learning about the great work other sickle cell researchers are working on at the College.

On Saturday 29th June, Fred used a local event of the Congenital Anaemia Network (CAN) to meet with people with sickle cell disease and to discuss about their live experiences and their awareness of the National Haemoglobinopathy Register. The poster on display, entitled “Your health, your data, your views”, was co-created with a couple of people with sickle cell disease whose input was incredibly valuable! Fred had engaged conversations with teenagers, parents, haematologists, … which were all very informative.

Global World Sickle Cell Day

Wednesday 19th June was World Sickle Cell Day.

To commemorate this event, Rutendo attended an Open Day event at Hammersmith Hospital hosted by the Imperial Sickle Cell Group to raise awareness on activities in health, research and advocacy in sickle cell disease within the Imperial College, Imperial healthcare NHS trust and beyond. Rutendo presented her sickle cell comparative research and listened to talks on exciting work and developments in sickle cell including from Dr Steven Okoli, consultant haematologist and co-founder of the Imperial Sickle Cell Group, Natasha Gordon-Douglas, lead mentor at the Sickle Cell Society and Ganesh Sathyamoorthy, deputy director of the Ethnicity and Health Unit.

Meanwhile, Fred participated in the first International Conference Sickle Cell Disease in Lusophone Countries in Lisbon, Portugal. His presentation focused on the global burden of sickle cell disease and the recommendations of the Lancet Haematology Commission on Sickle Cell Disease. The Conference had representatives from the World Health Organization, the European Hematology Association (EHA), ERN-EuroBloodNet, patient advocates, governmental authorities, health ministries, and healthcare professionals from Angola, Brazil, Cape Verde, Guinea-Bissau, Mozambique, Portugal, and Sao Tome & Principe. The need for reliable epidemiological data was one of the key take-home messages from this meeting.

Workshops & Online Survey

The James Lind Alliance and Genomics England are conducting a project in collaboration with the UK Sickle Cell Society on research priorities in genomics for sickle cell disease. Fred is involved in this project as an Information Scientist, alongside patient representatives and healthcare professionals. The team is organizing a series of workshops in person and online for young adults, adults, families and healthcare professionals. The first workshop will be held in London for adults (over 30s) on Tuesday 9th July. Participants can register using the following link.

Finally, EuroBloodNet, in partnership with the Lancet Haematology Commission on Sickle Cell Disease and ASCAT, is conducting a global survey of people with sickle cell disease to find out about their priorities in relation to research, education and policy. The survey was launched on the 19th of June and is available through the QR code or via this link.

Read June – A month of involvement in full

A quick recap

Last month, we shared our findings on research grants allocated to sickle cell disease in comparison with cystic fibrosis and haemophilia from 3 main UK funders. We also described challenges, in terms of patient numbers, in the quality of the hospital data that we are using.

What have we been up to this month?

We have began to draft written outputs of our literature review and continue to progress with our analyses on specific indicators of inequality for sickle cell disease, cystic fibrosis and haemophilia, and our hospital data analysis work. In this month’s blog, we focus on collaboration, networking and the dissemination of our findings, which are important in developing and strengthening our research and enhancing the visibility and impact of our findings.

1. Collaboration: National Haemoglobinopathy Register (NHR)

For various and complex reasons, there is a lack of good data on sickle cell disease in the UK (as in most countries).

Fred met with the Deputy Chair of the NHR to discuss the quality and completeness of the Register and how the data held in the NHR could potentially be used in the future to study and document inequalities in sickle cell disease.

We are currently planning an event to find out what patients with sickle cell disease know about the NHR and what kind of scientific questions they would like it to be used for.

2. Networking: Ethnicity and Health Unit

On May 16th, Fred & Rutendo attended the celebration of the work of the Ethnicity and Health Unit (EHU) at Imperial College London and of Professor Mala Rao‘s (director of the EHU) CBE.

We have been collaborating with the EHU during this project who are offering their expertise on ethnicity and health research and are supporting us in developing our patient engagement work.

This event was a great opportunity to network with the EHU team and other experts in public health and ethnicity research.

3. Dissemination: Annual Sickle Cell and Thalassaemia conference (ASCAT) 2024 abstract

Rutendo submitted an abstract to the ASCAT conference which will be held in London from 2nd October to 5th October 2024. ASCAT is Fred‘s favourite scientific conference.

The event will showcase breakthroughs, advancement and other important research in sickle cell disease and thalassaemia. Health care professionals, researchers and people affected by sickle cell disease and thalassaemia will be attending the conference.

The abstract that we submitted covered our work on research disparities in sickle cell disease, cystic fibrosis and haemophilia in the UK in which we analysed publicly available data on research funding (described last month) and funding related outputs such as registered clinical trials, scientific publications and resources available to dedicated UK charities.

See you next month!

Read May – Sharing science in full

A quick recap

Last month, we discussed our attendance at the Sickle Cell and Thalassemia All-Party Parliamentary Group and described how we performed our literature search which involved screening over 800 articles. We also described the data preparation/cleaning steps that we performed for our hospital data analysis study.

What have we been up to this month?

We have been extracting data from the literature search and exploring specific indicators of inequalities (e.g. number of clinical trials, publications or research funding). For the hospital data analysis study, we have began to explore trends in our data. We are keen to share the following early findings with you, highlighting that these are preliminary as we are conducting more in depth analyses.

1. Literature review

From the studies we included in our literature review, we identified key themes of inequalities  including access to care (e.g. delay in receiving timely pain relief), lack of knowledge of sickle cell disease from health care professionals, poor health outcomes (e.g. hospitalisations) and stigma and racism.

2: Specific indicators of inequalities

One of these is research funding where we investigated the money awarded by top UK funders to sickle cell disease research and compared this with funding allocated to cystic fibrosis and haemophilia. The UK funders that we included were: the National Institute for Health and Care Research (NIHR), UK Research and Innovation (UKRI), which includes the Medical Research Council (MRC), and the Wellcome Trust (Wellcome). We used publicly available data to obtain the information below.

Total amount of money awarded by funder (GBP) between 2010 and 2024

• Cystic fibrosis was awarded the most amount of money by all 3 research funders between 2010 and 2024.
• Cystic fibrosis was awarded around £67 and £74 million more than sickle cell disease and haemophilia, respectively.
• Both cystic fibrosis and haemophilia were awarded more research funding by UKRI and Wellcome though haemophilia received the least amount of total funding due to NIHR funding allocated to haemophilia.

3: Hospital data analysis

We have extracted routine hospital admission data from the Hospital Episode Statistics (HES) for the three conditions considered during the period 2013-2022. Through this, 32,253, 15,351 and 18,910 individuals were identified with sickle cell disease, cystic fibrosis and haemophilia, respectively. These numbers are higher than we would expect for all three conditions, so we are trying to identify why. The Cystic Fibrosis Registry is considered to capture 99% of individuals with cystic fibrosis across the UK, but as previously demonstrated in this article, there is a lot more uncertainty around the number of patients with sickle cell disease.

The importance of high quality data on the number of patients and their condition is nicely described in this statement from the Chief Executive of the Haemophilia Society, included in this report:

4. Conference  

Last weekend, Fred participated to the Annual Scientific Meeting of the British Society of Haematology (BSH) and gave a talk on sickle cell disease as a global health issue to an audience of several hundred participants. It was also an amazing opportunity to hear the brilliant B-Positive choir live! They were incredible.

Picture credit: Vincenzo Giacco (@Vin_Giacco)

Want to contact us?

If you have any questions about this work, feel free to email r.muzambi@imperial.ac.uk, f.piel@imperial.ac.uk or to post a comment.

Read April – Diving into the data in full