Patients engage with research on Paget's Awareness Day

Professor Stuart Ralston’s Bone Group, in collaboration with the Paget’s Association, invited patients with Paget’s disease to attend a buffet lunch, followed with presentations on Friday 11: January 2019

Paget's disease disrupts the normal cycle of bone renewal and repair, causing bones to weaken & deform. This event took place on Paget's Awareness Day. The 11 January is the anniversary of the birth of Sir James Paget, whose name was given to the condition. This is a very painful and disabling condition for people who have the severe form of this disease. It has been estimated that as few as 7% of those who have x-ray evidence of Paget’s disease actually come to medical attention.

Prof Stuart Ralston introduced the talks session with a presentation about Paget’s disease, its diagnosis and treatment and current research into this condition. Dr Nerea Alonso then presented information about this group’s research into Paget’s disease. Kathryn Berg then spoke about the PIP (Pain in Paget’s) study, with Dervil Dockrell, an Occupational Therapist, demonstrating the quantitative sensory testing which makes up a part of the PIP study.

About 16 patients, accompanied by some of their family members, attended the event and had the opportunity to quantitative sensory testing and using microscopes to look at images of bones affected by Paget's disease. The attendees found the afternoon very worthwhile and interesting, and they appreciated the opportunity to meet the research team, ask questions and understand the disease better.

The Ralston group research focuses on the pathogenesis and treatment of patients with bone and joint disease. Research projects are being undertaken with the aim to gain greater understanding of the genetic causes of bone and joint disease, with the aim of tailoring treatments more effectively to improve clinical outcome for patients. The ZiPP trial is a ground-breaking study which seeks to determine if prophylactic treatment of patients genetically at high risk of developing Paget’s disease can alter the natural history of the disease and improve clinical outcome.

Links

This article was published on 22 Jan, 2019