Our advocacy for infrastructure for a national registry and countrywide fine mapping, which would allow us to mesh wholesale with the global registry, is over a year old now. With nearly 5,000 signatures on an epetition and at least two sets of discussions between elected champions and the health minister of consecutive governments.

Only last week, the Clinical, Technical, Ethical Principal Committee (CTEPC) of the Australian Health Ministers' Advisory Committee (AHMAC) tabled it. We keep pushing for action and hopefully it is only days away.

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Well, we may not have the solution yet but we are getting closer thanks to the last wave of letter writing from parents late 2008. A working party is preparing an options paper to present to the Health Dept mid-2009. The recommendations will address our parent & professional advocacy for thorough genetic sequencing across the nation and a national registry so that all affectec by B/DMD will be treatment ready and able to participate in multicentre human trials as the opportunities arise. I'm a parent rep in the group but I am confident that our geneticists, research clinicians and health administrators will be agreeing on the best way forward for this crucial next step for B/DMD. Many politicians asked the hard questions in support and we thank them, especially Senators Trood and McLucas for being our champions throughout the campaign.
It’s been over 2 years but we believe our campaign to have the federal government fund a national registry for boys with Duchenne muscular dystrophy is at a critical stage. We’re nearly there and we’re sending you this update to say thank you for your past support, but also to ask you whether you have time to help push this decision over the line. You will be pleased to learn that a proposal is now ready for consideration by our health minister. Please read the latest update by following this link. http://tinyurl.com/DMDregistryupdate

As you will read, we parents are once again writing letters to our state and federal health ministers and local members of parliament. If you wish to join us and write a letter, fax or email we’d sure appreciate it. If our leaders receive a lot of reminders about the imminent treatments for Duchenne muscular dystrophy in the current genetic revolution, we believe the recommendations to make these boys “treatment-ready” in Australia will be adopted.

Please help by writing a letter and mailing or faxing it. The update link has some exemplars and background information, so it won't take long and we could have a national registry as a result of this timely and politic reminder!

Deb
Registry progress report last week, posted on our DF website - see what's new on www.duchennefoundation.org.au



"The Clinical Technical and Ethical Committee (CTEPC) have been tasked with providing the Australian Health Ministers Council with recommendations on establishing a national registry for Duchenne Muscular Dystrophy.

Western Australia has been asked to lead an inter-jurisdictional working group to look at the issue nationally and provide options and a way forward.

CTEPC met today to consider their initial paper. The need for a registry and the difference it will make when these children become part of international clinical trials is recognised. Options and advice have been given and work is now continuing.

We look forward to progressing this issue."

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