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Roger
1st June 2013, 14:36
I am a little surprised not to see this phase 3 trial publicized on the Forum given that the trial steering committee [of which I am a member] has asked the Association to advertise that we are looking for pwMND to join the trial. Also the MND Association is part funding it. There is information on the main web site:

http://www.mndassociation.org/research/MND+research+and+you/Get+involved+in+research/MND+Diaphragm+Pacing+Clinical+Trial

This trial is recruiting at various hospitals and a list can be found above. It is hoped that eventually this will be rolled out to 11 centers across the country. Suitable candidates from other areas should seek advice from their neurologist but they can be referred if they are eligible and are willing and able to travel. Local Groups and Branches may be able to assist with travel costs.

Andrew
3rd June 2013, 11:10
I am a little surprised not to see this phase 3 trial publicized on the Forum given that the trial steering committee [of which I am a member] has asked the Association to advertise that we are looking for pwMND to join the trial. Also the MND Association is part funding it. There is information on the main web site:

http://www.mndassociation.org/research/MND+research+and+you/Get+involved+in+research/MND+Diaphragm+Pacing+Clinical+Trial

This trial is recruiting at various hospitals and a list can be found above. It is hoped that eventually this will be rolled out to 11 centers across the country. Suitable candidates from other areas should seek advice from their neurologist but they can be referred if they are eligible and are willing and able to travel. Local Groups and Branches may be able to assist with travel costs.

Hi Roger,

Thanks for sharing this information.

Just as a side issue, at present there are 7 centres recruiting for this trial, not 11.

Best wishes,

Andrew

Roger
3rd June 2013, 12:18
That's true Andrew.
7 is the number of centres achieved so far and 11 the target agreed with NICE.
Other centres are expected to be announced following the Trial Steering Committee meeting in September.
The message here is that the process is ongoing so please do contact Dr Chris McDermott from Sheffield University.

Also, the trial eligibility criteria has been “clarified” to allow neurologists more scope to refer. Therefore, if pwMND interested have recently been told they where not eligible, they can ask their neurologist to review the updated criteria.

The trial needs more recruits.

mdwsamson
21st June 2013, 06:21
I am a trial participant on this trial and can say it was a well coordinated experience through Oxford. I would be interested to know if other members of the forum are participating .

Roger
23rd September 2013, 23:34
Centres now participating in the DiPALS trial are:

Oxford
Sheffield
Leeds
Manchester
Newcastle
Plymouth
London [Royal Free]

The trial will be open to new recruits for a few months more but it will close mid 2014so if you wish to participate you need to ask your Neurologist to check the updated inclusion & exclusion criteria and refer you now.

Recruits are wanted at all centres but especially in the South East willing to attend the Royal Free which was the last to join the trial so is now play ‘catch-up’for recruits.

Forfurther information: Dr Chris McDermott c.j.mcdermott@sheffield.ac.uk (c.j.mcdermott@sheffield.ac.uk) Tel: (0114) 2222261

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