Black Health Legacy

Black Health Legacy aims to improve the prediction, diagnosis and treatment of health conditions, such as diabetes, high blood pressure and kidney disease that affect Black African and Black Caribbean communities through genetic research. The study will recruit in NHS sites, across GP practices, hospitals, pharmacies, as well as community settings.

• Chief Investigator: Professor Sarah Finer
• Study Sponsor: Queen Mary, University of London

Study activities

Within GP practices, there are two recruitment approaches:

PIC sites:

Practices will need to sign a Participant Identification Centre (PIC) Agreement, display the study poster, run a pre-made EMIS search, screen the patient list to confirm eligibility, and send out study invitations via text message. Participants can self-recruit via the study website or contact the study team directly (via post, email or phone). They will be sent a saliva kit by post, along with a stamped, addressed envelope to return it to the study team.

Research sites:

Practices acting as research sites will need to complete an Organisational Information Document (OID). These practices will carry out the same activities as PIC sites – displaying the study poster, running an EMIS search, screening patient lists and sending text message invitations. The key difference is that interested participants can book an appointment slot and be seen by the Noclor team, depending on the practice’s availability. Participants may also be recruited opportunistically by staff within waiting areas.

Patient participation

Eligible participants will receive a patient information sheet (PIS) and provide written or electronic consent. They will complete a brief questionnaire collecting personal details (name, date of birth, address, ethnicity, NHS number), basic health information (diabetes status), and a quality-of-life assessment (EQ5D).

Participants will then provide a saliva sample using an Oragene kit (or similar), which will be sent to an approved lab for DNA extraction and genetic analysis. Consent will also be sought to securely access, store and link their NHS and UK health records (e.g. conditions, test results, past surgery etc.).

Finally, participants will be to asked to consent to be recontacted (up to four times per year) for future studies, which they are not obliged to take part in. Each participant will receive a £15 shopping voucher for taking part.

Patient eligibility

Inclusion:

• Age 16 Plus
• Willing and able to consent:
  • To give a saliva sample for DNA
  • For health data linkage
  • To be invited to recall
• Self-identifies as any of:
  • Black, Black British, Caribbean or African: African
  • Black, Black British, Caribbean or African: Caribbean
  • Black, Black British, Caribbean or African: Other Black
  • Mixed or Multiple ethnic groups: White and Black African
  • Mixed or Multiple ethnic groups: White and Black Caribbean
  • Mixed ethnic background that includes Black African or Caribbean

Exclusion:

• Inability to provide consent

To express an interest in this study or find out information on other studies open to you, please contact us.