North Wales psoriasis patients in ground-breaking drug study

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Pictured are the research team, consultant dermatologists Dr Andy Macfarlane , Caroline Mulvaney Jones, BCUHB research officer and Professor Alex Anstey .

Ground-breaking research into the impact of long-term drug therapies to treat North Wales people with the chronic skin condition psoriasis has won a top award.

Pictured are the research team, consultant dermatologists Dr Andy Macfarlane , Caroline Mulvaney Jones, BCUHB research officer and Professor Alex Anstey .

More than 140 psoriasis patients who are being treated at Betsi Cadwaladr University Health Board’s three acute hospitals are taking part in the national study.

The team at Ysbyty Gwynedd in Bangor, who recruited the North Wales patients, have now won an award from the British Association of Dermatologists Biologic Interventions Register (BADBIR).

The award, which names Ysbyty Gwynedd as a ‘model centre,’ is for recruiting the highest number of patients in North Wales to the UK-wide study, which will continue to monitor patients until at least 2028.

The research aims to assess the long-term safety of biologic treatments for psoriasis, which target a specific area of a patient’s immune system. These drugs are used to treat moderate to severe plaque psoriasis.

Ysbyty Gwynedd originally joined the study in 2011 and then in 2013 research officer Caroline Mulvaney Jones joined the project full-time to enhance the recruitment process.

There are now 63 patients registered with the study at Ysbyty Gwynedd compared to six just three years ago. The total number of patients registered with the study across all three BCU hospitals is 145.

The research team, which includes BCUHB lead dermatology specialist nurse Allyson Brown plus consultant dermatologists Dr Andy Macfarlane and Professor Alex Anstey, has now been awarded a ‘model centre’ trophy by BADBIR for the Most Improved Recruiting Centre in the Wales Region.

Caroline, 34, who studied for a psychology degree at Nottingham Trent University before completing a Masters in the subject at Bangor University, said: “It was fantastic to win the award and has really boosted morale.

“We’ve worked really hard to get the study to where it is today and now have a brilliant system in place and so it’s lovely to be recognised for all those efforts. It was really quite unexpected.

“We will continue to recruit for the study up to 2022. It’s doing so well across the UK that BADBIR has extended the study as the more information they can collect the better.

“Psoriasis affects people in different ways as there are so many types of the condition. Each patient is judged individually.

“Having access to the right treatment can have a huge impact on the patients’ mental health. Many of the patients love being involved in the study and completing questionnaires as they’re helping other people like themselves.”

To be eligible to take part in the study, patients need to score highly on a special clinical index for severity and also for depression life quality. They also need to have started one of the therapies being researched within the past six months.

There are currently more than 150 hospital sites across the UK and Ireland taking part in the BADBIR study and overall more than 12,000 participants have registered with more than 60,000 ‘follow-ups’ research collected.

“I was recruited to work on the study around four years ago as at that time there weren’t any consistent resources available to be able to move the study on,” said Caroline.

“I was brought in to help manage the study and from there recruitment began to improve.

“During the past few months we’ve had a significant boost in recruitment for no other reason than the patients have presented to the team.

“The paper work is quite timely and the patients must be reviewed on a six-month basis initially. There was too much for one person to manage and it became clear we needed a new system in place to lessen the burden on the team.

“We have a fantastic working relationship.

“It’s an ongoing process. Patients are reviewed every six months for the first three-and-a-half years and then yearly after that. All they have to do is complete questionnaires. It’s in the best interests of patients to be enrolled in the study so that we can feed back any changes or adverse effects and trends relating to a particular drug. Patients would automatically have follow-ups in any case to check their progress regardless of whether they were involved in the study.”