RecruitingObservational

SCORE - Sickle cell outreach, resources & engagement

The SCORE study wants to create local support centres, called 'sickle hubs', for people living with Sickle Cell Disease (SCD) in Liverpool. SCD mainly affects people from ethnic minority backgrounds, and they often face challenges like stigma and difficulties accessing healthcare. This study will ask patients, their carers, healthcare staff, and other important groups for their ideas on what these hubs should look like, where they should be, and what services they could offer. The goal is to design hubs that offer more all-round, culturally sensitive care, helping patients feel better and stronger, and making it easier for them to get the support they need from the NHS. Ultimately, this could lead to a future study testing these new centres.

At a glance

Status

Recruiting

Sponsor

Liverpool School of Tropical Medicine

Enrolment target

200

Start

01 Oct 2025

Estimated completion

31 Aug 2026

Sickle cell disease

What is this study about?

Sickle Cell Disease (SCD) is a long-term illness that many people – especially those from ethnic minority backgrounds – live with. Unfortunately, people with SCD often face extra challenges, like being treated unfairly or struggling with money, which can make it harder for them to get the healthcare they need. There's a real need for better support in the community for people with SCD.

This study, called SCORE, wants to explore how we can create special local support centres, or 'sickle hubs', in Liverpool. These hubs would offer a range of services designed to help people with SCD feel healthier and more supported in their daily lives. This could include things like health education, counselling, or even 'buddies' to help them with hospital visits. The idea is that these hubs would work closely with community groups and the NHS to make sure people get the right care, at the right time, in a way that truly understands their needs and background.

The research team will gather ideas and opinions from many different people, including patients, their families, healthcare workers, and community organisations. They will use a process called 'Delphi cycles' to bring everyone's thoughts together and agree on the best way to design these hubs. The ultimate aim is to create a clear plan for how these hubs would work, ready for a future study to actually test them out. This could make a big difference to how people with SCD in Liverpool get the support they need, helping them to live better lives and also making it easier for the NHS to care for them.

Key takeaways

This study aims to improve care for people with Sickle Cell Disease (SCD) in Liverpool.
It focuses on designing local 'sickle hubs' to offer better, all-round support.
Your experiences and ideas will help shape what these community hubs could look like.
Participation involves sharing your thoughts in discussions, not medical treatments.
The study has minimal risks and allows you to stop or skip questions at any time.
Results will contribute to a future study that might trial actual 'sickle hubs'.

Who may be eligible?

The SCORE study is looking for a wide variety of people to share their experiences and ideas. If you are 15 or older and live with Sickle Cell Disease, you might be able to take part (if you're under 18, a parent or guardian would also need to agree).

They also want to hear from adults (18+) who care for someone with SCD, healthcare professionals who look after SCD patients, and people who work for local support groups, councils, or other organisations that help people with SCD. Basically, if you have experience with Sickle Cell Disease in any of these ways, your input could be very valuable.

To join, you must be willing to give your consent to participate. The study is particularly looking for people from age 15 up to 100 years old, and anyone can take part, regardless of their gender.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 15 years old or older?
Do you have Sickle Cell Disease, or do you care for someone who does?
Do you work in healthcare and support patients with SCD, or are you part of a community group that helps people with SCD?
Are you willing to share your thoughts and experiences about community support?
Are you able to agree to take part in the study?
If you are under 18, would your parent/guardian also give consent?

Answer every question to see your result.

What does participation involve?

If you take part in this study, you won't be given any new medicines or treatments. Instead, the study involves sharing your thoughts and experiences. You would be asked to take part in something called 'Delphi reflection cycles', which means you'll share your ideas and opinions over three rounds of discussions. These discussions will help the researchers understand what people think about setting up community 'sickle hubs' and what services they should offer.

The researchers will also gather information from other sources like a survey, focus group discussions, and interviews, but your involvement would primarily be in those Delphi discussions. The study aims to gather a wide range of views to help design the best possible support centres for people with Sickle Cell Disease in Liverpool. The whole project is planned to run for about 15 months, from May 2025 to August 2026.

Potential risks and benefits

There are no direct personal benefits for taking part in this study, but your contribution will be very important in helping to design better support services for people with Sickle Cell Disease in the future. By sharing your experiences, you'll be helping to shape how community centres could improve the well-being and resilience of others living with the condition. This is considered a very low-risk study because it only asks for your thoughts and feelings about future community centres. However, talking about your experiences, even in a general way, might sometimes bring up difficult memories. If you feel uncomfortable or upset at any point during the discussions or surveys, you can pause, skip any questions you don't want to answer, or stop participating altogether, without needing to give a reason.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Liverpool School of Tropical Medicine (LSTM)
City only
Liverpool, United Kingdom

Common questions

What is the main goal of this study?

The goal is to design community support centres, called 'sickle hubs', for people with Sickle Cell Disease in Liverpool to improve their care and well-being.

What is a 'sickle hub'?

A 'sickle hub' would be a local community centre offering various support services for people with Sickle Cell Disease, like health education or counselling.

Who can take part in this study?

People aged 15+ living with Sickle Cell Disease, their adult carers, healthcare providers, and people from community organisations that support those with SCD.

Will I have to take new medicine or undergo tests?

No, this study does not involve any medicines or tests. It only asks for your thoughts and experiences through discussions and surveys.

How long will the study run?

The overall project runs from May 2025 to August 2026, but your personal involvement will depend on the specific parts you take part in, mainly the discussion rounds.

How to find out more

Susie Crossman

susie.crossman@lstmed.ac.uk +44 (0)1517052564 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.