Clinicians and scientists meet to discuss new guidelines for IBM diagnosis and treatment
The outcomes of a London inclusion body myositis (IBM) workshop have been published in the medical journal Neuromuscular Disorders by Dr David Hilton-Jones from the Oxford Muscular Dystrophy Campaign Muscle and Nerve Centre, Prof. Mike Hanna from the MRC Centre for Neuromuscular Diseases, and collaborators. At the meeting, the first of its kind organised by the MRC Centre for Neuromuscular Diseases, 29 international expert scientists and clinicians made recommendations to improve diagnosis of the disease, and discussed new potential treatments.
IBM is the most common neuromuscular condition to affect the elderly. Although the scientific world has various ideas about the causes of this disease a detailed explanation is unknown, so clinicians and scientists are sharing their knowledge to bring a better understanding of the condition, and enable steps towards an effective treatment.
Improvements in diagnosis are also required, since even now some doctors are largely unaware of this condition, and are unable to recognise the symptoms. IBM occurs primarily among men after age 50 but can affect women. The typical features of IBM include a weakness of the muscles of the wrists, fingers, front of the foot, and the front of the thigh, and it generally has a slow progression.
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Why was the workshop organised?
The workshop was an opportunity for experts in the field to discuss four important questions concerning patients, diagnostics and treatment:
1) Are the clinical diagnostic criteria correct and up to date?
2) How can the diagnosis of the condition be improved?
3) Is there new scientific research that can help us understand IBM?
4) Is there evidence to support new clinical trials for IBM that could lead to new treatments?
What did the meeting achieve?
Some of the features of IBM can be found in other conditions, which makes diagnosis difficult, and at present there is no definitive test for the condition. The panel underlined the importance of combining the clinical evidence with a well-documented clinical and family history in order to differentiate IBM from other conditions. The workshop participants agreed on the need for more diagnostic tests, and they drew up a list of possible candidates that might help in developing accurate diagnoses.
The workshop participants also discussed current research with the potential to lead to clinical trials in the future. The treatments under investigation target the two processes believed to be involved in causing the symptoms of the condition: the accumulation of clumps of proteins and the inflammation that occurs in the muscles. They pointed out that IBM shares some of these pathological features with other diseases such as Alzheimer's, amyotrophic lateral sclerosis (ALS) and Huntington's disease (although there is no clinical connection between them). The hope is that if the reasons for these similarities can be understood, then therapies that are in clinical trials for these conditions might also be used for IBM.
The workshop attendees were excited by the creation of a new IBM-net database that will represent a structured collection of clinical records and a means to collect, store and retrieve patient data. They agreed that this initiative will offer patients improved access to IBM research, and assist clinicians in tracking the progression of symptoms (also known as the 'natural history') of IBM across a wide cross-section of patients. This is important because it will facilitate the adoption of national standards for the diagnosis and management of IBM and lay the foundations for future clinical trials.
Further information and links
More information about inclusion body myositis (IBM).
Inclusion body myositis research news.
Current clinical trials for IBM.
