New tool will monitor rare disease

Posted on 15th September 2014

A new research collaboration launches this week that’s hoping to shed light on the factors affecting a rare and potentially debilitating medical condition.

Little is currently understood about Ankylosing Spondylitis, a chronic inflammatory disease that can affect the spine and other joints. Known as AS, symptoms of the condition include severe pain and stiffness which can progressively worsen until the bones in the spine fuse together.

Working with Cornish technology company myClinicalOutcomes, a team at the European Centre has developed an online system to monitor the symptoms of AS, and capture information about exercise and other daily activities.

Physical therapy is among the treatments commonly used to help patients with AS keep mobile, yet the effectiveness of exercise as a treatment is not entirely clear. By assessing the activities and symptoms of patients, the research team are hoping to better understand the impact of physical therapy on the condition’s symptoms.

Dr Clare Redshaw is leading the study and believes this research is long overdue:

It can take nearly a decade for many AS sufferers to receive a diagnosis and the medication needed to help treat their symptoms. This project will provide AS suffers with a way to monitor, and therefore potentially manage their condition. Ultimately we hope that the data collected during this study will provide further insights into the role that physical activity can play in managing the disease.”

The AS Observer study is initially recruiting 150 participants aged 18 and over with AS and is asking them to record their physical activity routines, and the severity of their symptoms, on a weekly basis.

Partnering with myClinicalOutcomes has played a crucial role in this project, with their expertise in developing tools for clinicians an important step for both this and the next phase of the research. The team hope that the online symptom monitor will eventually allow clinicians to observe and assess a patients needs remotely; providing a level of care that isn’t currently available.

You can find out more about this research and sign up here.

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