A new study, called MYOSCOPE, funded by NIHR RfBP, is due to start in September 2023, led by healthcare professionals at Alder Hey Children’s Hospital, Great Ormond Street Hospital, the University of Liverpool and the University of Manchester.
In this study, we will test a tool called handheld nailfold capillaroscopy, which allows children and young people with dermatomyositis to clearly see the small blood vessels at the base of their fingernails. This is completely painless. The tool captures pictures of blood vessels which are shown on a computer screen when children or young people attend clinic.
We know that in dermatomyositis, disease affecting skin and blood vessels often stays after muscle weakness improves. Children and young people may want to stop medicines when they feel better, less weak and their disease is less visible. We are aware that medicines can cause sickness, weight gain and infection. We also know however that treatment of active or ‘grumbling’ disease is vital to improve future outcome. Changes in blood vessels happen when juvenile dermatomyositis is active or worsening. Seeing small blood vessels at the base of the fingernail is helpful. Doctors look at nailfold vessels in clinic to see how ‘active’ disease is. Current tools in clinic only allow doctors to see if vessels are normal or abnormal. Patients cannot easily see this. The low-cost handheld tool/camera that we will use in this study brings imaging to patients at their usual clinic visit for the first time. We think it will help patients and parents know when disease is active, and reassure them when disease is quiet. Our patient / parent advisory group think that this will help them understand their disease and need for medicine, aid shared decisions and improve outlook.
In this study, we will ask 40 patients from 2 sites (Liverpool and London) to have nailfold capillaroscopy performed when they attend for their routine clinic and JDCBS study visit. We will ask them to complete a questionnaire at the time of their visit and end of the study to find out if they found seeing their blood vessels helpful or not. We will invite them to take part in an optional patient or family interview to further explore their feelings about use of this tool. We will also ask doctors if the tool made them change their treatment of a patient. At the end of the study, we will compare nailfold changes to other measures of disease activity. The results of this 2-year study will be available at the end of 2025.
Written by co-leads, Dr Liza McCann & Prof Ariane Herrick on behalf of the research group.
