GenRes Study Day 2013

GenRes Study Day 2013

Attendees at the annual GenRes Study Day were rewarded with a full and diverse programme that still left room for group members to swap tips and tricks on study recruitment.

Formed and supported by the NIHR Collaborative Group for Genetics in Healthcare (CGGH), the GenRes group is open to all genetic research nurses, counsellors and coordinators involved in recruitment to NIHR portfolio studies.

Dr Gill Borthwick, National Research Coordinator for the CGGH, opened the day with good news all round. Genetics is currently the top performing NIHR Specialty Group as judged by a number of the NIHR key recruitment metrics.

There was also news of the advance of the NIHR UK Rare Genetic Disease Research Consortium Agreement, which has also come to be known as the 'Musketeers' Memorandum'. This initiative was instigated to cut through some of the red tape that is particularly prohibitive to clinical genetics research on rare diseases.

The Memorandum, which 18 UK  NHS Organisations  that host Regional Genetic Services have now signed up to, was necessary because in many cases 'more administrative staff were involved in the permission process than there were patients with the disease', Dr Borthwick said.

After the greeting, Professor Nazneen Rahman, head of genetics and epidemiology at the Institute of Cancer Research (ICR), gave attendees a whistle-stop tour of cancer genetics; at barely more than half an hour long, there was a lot of ground to cover.

Professor Rahman began by outlining some of the basics before discussing the three portfolio studies - BOCS, FACT and COG - for which she is the Chief Investigator. Along the way there were corrections of common misconceptions ('Myriad did not discover BRCA2; it was discovered at the ICR!') and news of the ambitious Mainstreaming Cancer Genetics programme. This project began this year and looks at a host of issues relevant to the integration of routine genetic testing in cancer patient care.

A talk on ethics by a professor at the University of Oxford may have set some fearing 40 minutes of airy philosophising, but the presentation by Professor Michael Parker, Director of the Ethox Centre, was no less grounded in everyday genetics research than Professor Rahman's.

Much of the discussion led by Professor Parker focused on consent and its importance in genetic research. After a quick look at how ethicists classify responses to research dilemmas, attendees were given a case study to consider. Although the study in question looked relatively straightforward - and was entirely plausible - it threw up a wealth of ethical questions.

Two group sessions followed lunch. In the first, representatives from genetics portfolio studies presented news of how they were getting on and Lauren Roberts gave an update on SWAN UK activities. Then came a group discussion on 'Recipes for Recruitment'. This session was concluded by Professor Sir John Burn, leader of the CGGH in somewhat geographically partisan fashion.

Success in study recruitment, said Sir John, could be summed up in four key concepts. Firstly there was 'Theatre' - the importance of being enthusiastic about a study; then came 'Organisation'; next it was 'OK to ask' patients or clinicians about possible involvement; and finally there's 'Networking' which meant 'getting out there' and not just 'sitting behind a desk, sending e-mails'. Of course, the first letters of those ideas spell out a word close to Sir John's heart.

Sir John could hardly be accused of a lack of 'Theatre' during the final talk of the day focusing on the CaPP3 study which he is currently leading. CaPP3 follows on from CaPP2, which showed that daily aspirin significantly decreases the risk of bowel cancer in people with Lynch syndrome, a cancer predisposing genetic disorder.

CaPP3, which was awarded a grant of £1.4 million from Cancer Research UK, is primarily a dose-finding study. Sir John's run through the history of the CaPP programme was a highly engaging tale of the challenges that can arise with multi-centre international trials.

See the Programme for the day.