Research+Me Consent for Contact Research Registry
Research type
Research Database
IRAS ID
317091
Contact name
Yan Yiannakou
Contact email
Research summary
Research+Me Consent for Contact Research Registry
REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
23/NE/0090
Date of REC Opinion
22 Jun 2023
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Research+Me is a digital database for people who might be interested in taking part in research. It allows research teams to easily contact those individuals who want to participate. We call it a consent-for-contact registry. The aim of the registry is to empower more people to take part in trials and thereby access the latest treatments and technologies.
Anyone aged 18 or over can register to be involved. Data is held securely on a cloud-based application. We keep contact details together with a brief inventory of medical conditions; the latter allows us to limit the number of irrelevant invitations.
Most trials served by the registry do not require transfer of patient contact details. If a registrant responds to an invitation about a study they are asked to complete a short screening questionnaire and if they seem eligible are invited to contact the research team themselves. Occasionally research sites outside Newcastle request contact details of registrants who have volunteered, are eligible and local to the site. In these cases the registrant is specifically asked if they agree to this transfer and a written agreement is provided to restrict how that data can be used.
Research programme
The Research+Me registry is run by the Newcastle Patient Recruitment Centre. To date the registry has focussed on promoting trials around Newcastle, but we are now developing the capability to serve other regions in the country. Most of the trials served by the registry are ‘late phase’ trials, which means they are assessing the effectiveness of new treatments after initial safety assessments have been satisfactory. Most of the trials assess treatments for common chronic conditions. Patients with these conditions are often managed by their GPs, rather than specialist hospital clinics, so are less likely to be invited to participate in trials. By using a registry, promoted to all areas in society, we hope to improve inclusivity and equity of clinical trial recruitment. In the past, access to clinical trials has been largely through specialist hospital clinics. Our aim is to empower people from the wider community to take part in trials and thereby access the latest treatments and technologies. Research trials are vital if we are going to develop new and better treatments. A consent-for-contact registry is one of the most effective ways of enabling recruitment to trials.
Research database title
Research+Me Consent for Contact Research Registry
Establishment organisation
NIHR Patient Recruitment Centre: Newcastle, The Newcastle upon Tyne Hospitals NHS Foundation Trust
Establishment organisation address
Campus for Ageing and Vitality
Westgate Road
Newcastle
NE4 6BE