Scottish health research register celebrates 15 years

A pioneering initiative for connecting Scottish researchers and volunteers who want to take part in studies that improve the country’s health is celebrating its 15th anniversary. Established by NHS Research Scotland in 2011, SHARE, the Scottish Health Research Register and Biobank, is one of the world’s most advanced electronic patient recruitment registries, designed to streamline participant recruitment for medical studies across Scotland. Over 313,000 volunteers have signed up to date, signalling their enthusiasm to get involved in health research projects – from online surveys and questionnaires to trials of new treatments and technologies. Participation is entirely voluntary, and members choose which projects they want to be involved in. It is thanks to SHARE that over 36,320 volunteers have been able to take part in vital health studies. SHARE has also taken a distinctively inclusive approach by encouraging registration from anyone in Scotland aged 11 and older who would like to participate, helping to ensure that it has as diverse a database as possible and shaping the future of healthcare. Across its 15 years, it has received the backing of well-known Scots including television presenter Lorraine Kelly, champion long-distance runner Eilish McColgan, and former Scotland national football team manager Craig Levein, who have registered and supported its commitment to helping forge the future of healthcare. SHARE – which is funded by the Chief Scientist Office of Scottish Government – is also unique in leveraging Electronic Health Records (EHRs) data for ‘precision matching’ volunteers to studies. A basic registration profile is matched to an individual’s Community Health Index (CHI) number – a unique 10-digit number assigned to every person registered with a Scottish GP. This safely pulls and matches health records spread across various hospitals, clinics, and GP surgeries into a coded profile. Researchers then use coded data to identify matching candidates for specific health trials. It offers much greater accuracy in matching patients to clinical trials than reliance on self-reported conditions and interests. SHARE director Professor Brian McKinstry said: “We are delighted to be celebrating a milestone 15 years of SHARE. “It is a hugely important and successful part of the research infrastructure in Scotland and remains one of the most advanced patient registries supporting researchers across NHS, academia, and industry, offering members of the public an easy way to get involved in future research. “Registration remains simple, taking less than two minutes, but the benefits can be long-lasting and hugely impactful in identifying new treatments, better methods, and fundamentally improving lives.” SHARE has seen its register grow steadily from the 85 signed up on its first day back in 2011 to over 313,000 volunteers now on the register. In 2013, SHARE expanded to encompass the SHARE Biobank. If a volunteer requires a routine blood test at their GP surgery or hospital, any leftover blood that would normally be discarded is automatically intercepted, anonymised, and stored in the SHARE Biobank. This process is achieved via NHS blood sciences laboratories. Once collected, the samples – of which the Biobank currently holds over 200,000 – are anonymised and can undergo laboratory processing, such as the extraction of DNA and protein components for future medical and genetic studies. The Biobank has facilitated studies across multiple therapy areas including diabetes, cardiovascular, cancer, respiratory, maternity, multimorbidity, mental health, and dementia. SHARE works across Scotland and is part of a wider suite of patient recruitment registers that are used to help connect the public with clinical trials and make it easier for researchers to identify willing and suitable participants. This includes Be Part of Research which operates across the whole of the UK and enables members of the public to search for clinical trials b