Surveys and Research

Turning lived experiences into evidence for better sickle cell care.

Research Findings

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Improving Sickle Cell Crisis Care in the UK

Status: In progress

A national research project exploring the experiences of people living with sickle cell when accessing emergency and hospital care. By identifying gaps in pain management, communication and clinical practice, we aim to drive meaningful improvements in sickle cell crisis care across the UK.

Beyond the Crisis: Voices from Practice

Status: Planned

Listening to healthcare professionals to better understand the challenges, barriers and opportunities in delivering high-quality sickle cell care. The insights gathered will help shape future education, resources and quality improvement initiatives through Beyond the Crisis

Pain Plan Access Study

Status: Planned

Exploring access to personalised pain plans and identifying the barriers to their use across healthcare settings. The findings will directly inform the development of The Pain Plan Project, helping improve awareness, accessibility and implementation of personalised pain plans for people living with sickle cell.

Treatments, Clinical Research & Information

The Sickle Cell Care Collective does not aim to replace specialist medical advice or duplicate the excellent work already being done by national organisations.

Below you'll find trusted sources offering evidence-based information on treatments, clinical research, emerging therapies and opportunities to get involved in research.

  • NIHR BioResource

    Supports research into a range of health conditions, including programmes involving people living with sickle cell disease. Learn how research participants help advance new treatments and improve understanding of the condition.

  • National Institute for Health and Care Excellence (NICE)

    Stay up to date with the latest NICE guidance and treatment recommendations for sickle cell disease, including newly approved medicines and innovative therapies becoming available on the NHS.

  • NHS England – National Haemoglobinopathy Programme

    Information about specialist haemoglobinopathy services, national standards, care pathways and programmes designed to improve care for people living with sickle cell and thalassaemia.