Gambian Festival sparks Sickle Cell sign-ups as Fatimah leads the call

Our Clinical Research Facility (CRF) has intensified efforts to widen participation in health studies after a successful outreach at the Gambian Festival, where staff promoted ongoing research and clinical trials, including the IBHO sickle cell project. The appearance led to immediate community engagement and resulted in a local resident, Fatimah, a Gambian Muslim woman, joining the IBHO project and sharing her experience on film in collaboration with the NIHR communications team.

Festival-goers were offered clear information about study aims, eligibility and safeguards, with CRF staff answered questions and addressed common concerns about consent, time commitments, trust issues and participant safety. Materials were tailored for cultural relevance, reflecting the higher prevalence of sickle cell conditions among people with West African heritage and the need for better representation in research cohorts.

Fatimah decided to take part after speaking with the team at the event. She subsequently recorded a short video discussing her motivations and the practicalities of participation, encouraging others from similar backgrounds to consider research involvement. The video has been widely shared across our channels and by partners, and has prompted further enquiries from people who said they had not previously seen themselves reflected in research communications.

https://video.wixstatic.com/video/cc00e1_f2ecded6907f4b82bdacef3769472b30/1080p/mp4/file.mp4

CRF staff said the festival presence formed part of a broader push to reduce barriers faced by underserved communities, citing evidence that more representative participation improves the quality and relevance of clinical findings. They reported early indications of impact, including increased requests for information about the IBHO sickle cell project and new links with community leaders willing to help spread the word about IBHO.

Attendees at the festival cited the opportunity to ask questions informally and in familiar surroundings as key to building trust. The CRF emphasised practical steps designed to make involvement easier, such as assurances about participant safety and the confidentiality of personal information.

The NIHR communications team’s partnership with Fatimah’s as an IBHO participant was described by her as a significant factor in extending reach beyond the one-day event, with short, participant-led messages performing strongly on social channels(NIHR article to be published soon). The CRF plans to develop further content in this style and to return to community venues for follow-up conversations, aiming to convert interest into sustained participation across a range of studies.

While precise sign-up figures will be confirmed in due course, the CRF said the Gambian Festival engagement demonstrated that targeted, culturally informed outreach can deliver swift results. Improving representation is essential for conditions such as sickle cell disorders, where experiences and responses to treatment may vary by population, and that community voices should shape how research opportunities are explained.

The CRF is encouraging prospective participants, carers and community advocates to make contact for confidential discussions about eligibility and expectations, noting that involvement is voluntary and can be tailored to individual circumstances.

Fatimah, who continues to work with the team, said she hoped her story would reassure others that research is “for us, too”, and that greater diversity among participants will help ensure future findings benefit everyone.