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Research // Taking part in research // Natural History Study

The Natural History of Inclusion Body Myositis (IBM)

Lay summary from the UK Clinical Trials Gateway website
This study seeks to better characterise the condition by gathering data from as many cases of IBM as possible. This will build an important resource and so form the starting point for future studies of the illness.

Who can participate?
Any person who meets the established diagnostic criteria for inclusion body myositis.

What does the study involve?
Participants in the project will be asked to volunteer to undergo a standardised assessment at least annually for a five-year period. We will record background information on the history of the illness and any other medical conditions, plus how IBM currently affects everyday tasks and the findings of a physical examination. As well as this clinical data, we will also ask participants to donate a small blood sample for storage and extraction of DNA and serum. The serum and DNA samples will be stored for used in future studies of the disease. All data will be recorded on a secure central computer database. This is a multi-centre study and to allow as many people as possible to participate we will make data entry possible by other muscle disease specialists around the UK (over a secure internet link). This will allow people to be seen near to home. Alternatively, the necessary clinical data can be sent to our hospital for us to enter into the database. By repeating our assessments over five years, we will be able to give a much more reliable and accurate prediction of the course of the disease.

What are the possible benefits and risks of participating?
This study will therefore improve knowledge of IBM and so first allow us and other doctors to give more accurate prediction of the likely progression of the disease to our IBM patients. In time, analysis of the clinical data plus studies of the DNA or serum gathered for the study may contribute further. Such future follow-on studies offer the possibility of identifying risks for developing IBM and could help generate interventions to reduce the disability IBM causes. The only burden we foresee to participants is the inconvenience posed by an additional annual trip to hospital for the assessment, and the discomfort of undergoing a single blood test.

Where is the study run from?
The study is run from The National Hospital for Neurology and Neurosurgery in London, with the inclusion of other participating centres around the UK.

When is the study starting and how long is it expected to run for?
The study started in January 2012 and will run until 2014.

Who is funding the study?
The study is partly funded by the Muscular Dystrophy Campaign.

Who is the main contact?
Dr. Pedro Machado,
Gisela Barreto,
For public enquiries: Dr Matthew Parton Institute of Neurology Queen Square London WC1N 3BG United Kingdom,

Natural History IBM Study

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