FSHD Global publishes clinical practice considerations for FSHDJuly 14, 2016
Rare Disease Day:
Awareness is key.FSHD, RareDiseaseDay, fundraising, awareness
A major issue for FSHDfatigue, fshd, exercise, physiotherapy
Reading the science:
How to tell the good from the not so good.FSHD, facioscapulohumeral muscular dystrophy, publications, science
Facio-therapies announce breakthrough:
Facio-therapies recently announced a breakthrough development in FSHD drug discovery.research, science, fshd, facioscapulohumeral dystrophy, biotech
Exercise & FSHD:
The Latest Studyconsensus, FSHD, exercise
We are proud to be recognised by The Australian Charity Awards:
FSHD Global has been recognised as a Winner for Outstanding Achievement in the Australian Charity Awards 2016.charity, awards, FSHD
Short Story from Daniel Howe – Life with FSHD:
Lavender BluesFSHD, lavender,
Folo – Shopping for Love:
A new way of givingfolo, philanthropy, giving, charity, shopping
A new mechanism for FSHD:
New drug targetsFSHD, D4Z4, Dux 4, science
Seeking a Volunteer Graphic Designer:
Build your portfolio and make a difference at the same time!volunteer, graphic designer
FSHD Global publishes clinical practice considerations for FSHD:
FSHD Global publishes clinical practice considerations for FSHDscience
FSHD : It’s not all just about muscles.:
FSHD: It's not just about muscles.science, muscles, FSHD
FSHD stem cells: revolutionising research:
FSHD stem cells: revolutionising researchFSHD Global Research Foundation
CRISPR & FSHD:
Harnessing a New TechnologyScience, DNA
Altering Gene Expression:
New tools with big potentialScience DNA
Treatments for FSHD:
Small Molecules: Offering hope for people with FSHDNature chemical biology
FSHD Global publishes clinical practice considerations for FSHD
Clinical practice guidelines are an important part of clinical practice for many health professionals. Health professionals need to know about, understand and critically appraise new evidence as it becomes available. The problem facing many health professionals is the pace at which new evidence is generated. It’s estimated that 2.5 million scientific papers are published each year. Only some of these will be relevant to clinical practice, but health professionals need to know which ones are important and represent quality research, and which ones are not. This is where practice guidelines come in. Collating new research as it becomes available and systematically assessing it for quality before developing guidelines for clinical practice based on the available evidence.
Guidelines generate an accepted standard of care and create a benchmark for quality of care that clinicians can work to. Up until 2015 there were no guidelines for FSHD. Health professionals were essentially treating based on their own experience. In 2015 the American Neurological Association produced a guideline that covers aspects of diagnosis and management of FSHD.(1) However, this guideline was US focussed and did not discuss who should be part of a care team, lifestyle management, respiratory function or options for rehabilitation.
In September 2015 FSHD Global convened a workshop of 13 leading international and Australian clinicians to expand on the US guidelines.(2) The guideline covers diagnosis and management of FSHD and sets out the standard of care that people with FSHD in Australia should expect from their care team.
The practice guidelines can be found here
The Foundation will be preparing a range of materials to support the guideline including factsheets and learning materials. These will be available soon.
- Tawil R, Kissel JT, Heatwole C, Pandya S, Gronseth G, Benatar M, et al. Evidence-based guideline summary: Evaluation, diagnosis, and management of facioscapulohumeral muscular dystrophy: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the Practice Issues Review Panel of the American Association of Neuromuscular & Electrodiagnostic Medicine. Neurology. 2015;85(4):357-64.
- Tawil R, Mah JK, Baker S, Wagner KR, Ryan MM, Sydney Workshop P. Clinical practice considerations in facioscapulohumeral muscular dystrophy Sydney, Australia, 21 September 2015. Neuromuscular disorders : NMD. 2016;26(7):462-71.