Call for Applications

Research Project - Epidemiology of FSHD

Fascioscapulohumeral Dystrophy (FSHD) is a debilitating life-long muscular dystrophy which affects an unknown number of Australians.  Recent European research suggests it may be the most common of all dystrophies, but no detailed study has ever looked into how widespread the disease is in Australia.

Research proposals are called for a comprehensive population-based study to examine the prevalence and incidence of Fascioscapulohumeral Dystrophy (FSHD) in Australia. 

The primary groups of specialists managing FSHD patients in Australia are neurologists, although other specialties are also involved.  The study will likely entail the interviewing/surveying of neurologists in Australia. 

Expectations are that the study should be completed within a 12 month time-frame.

Key parameters* to examine should include: 

• Prevalence (total cases estimate)
• Incidence
• Breakdown of prevalence according to severity of disease
• Estimate of undiagnosed patients not currently under care of a specialist
• Basic patient demographics, including age, sex, age of onset, etc.
• Standard of care
• Frequency of diagnosis by genetic methods 

*All data to be based on Australian information sources.

The output of the research project will be a detailed, well referenced report to be made available to FSHD Global at the conclusion of the project.  The intent is that the authors of the report should publish the findings in a respected Australian medical journal.

The applicant/s should have an established track record in researching the epidemiology of human disease, preferably with specific experience in musculoskeletal, neuromuscular, or muscular dystrophy. Please submit a proposal, including a detailed budget and CV to research@fshdglobal.org

Applications close Sunday 31 October, 2010.