I was on the MND Smart site earlier, just checking how all the big trials are going .Well shock horror theres only two taking place. First one is a drug called Memantine to improve memory loss and the other is Trazodone for anxiety and depression. Oh and they need more money for research . What happened to all the fast Tracking trials of drugs thats going to have an impact on this disease. Smart has been going for a few years now , even with Covid surely its got be better than this. Who are we or unable to question the so called Professionals.
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Thats odd I also went on their site and I have found that my local hospital the nurse organising it has left. I worry that re covid hospitals are saying they are busy to take on trials etc.Diagnosed May 2021 bulbar onset als. -
SMART trial update came out today - not sure whether this is good news or bad?
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They are definitely still recruiting across the country because I emailed them and asked. My Dad was referred by his Consultant back in Jan but hadn't heard anything. My email on a Sat prompted a call to my Dad on Monday and they are going out to do his screening next week. I'd recommend emailing them directly.Originally posted by shelly21 View PostComment
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Diagnosed May 2021 bulbar onset als.Comment
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shelly21
My understanding is that you register your interest in participating in MND Smart Trials and you will then be contacted when a trial centre opens near you. They are not all over the country as yet. This is what I did. Hope this helps. The webpage on MND Smart gives a lot of information x
Diagnosed 3rd November 2021 Bulbar OnsetComment
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Yes but Birmingham is up and running. I registered may last year and I would've thought that I live so close etc that I would've been contacted. Like a lot of other departments it seem you have to chase them.Diagnosed May 2021 bulbar onset als.Comment
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Im registered however heard nothing...I flagged this up with MND consultant this week. He's sending an e-mail😏🙏Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.Comment
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You would think so. Let's hope you hear something soon. I am still waiting for them to open a trial centre near me,Originally posted by shelly21 View PostDiagnosed 3rd November 2021 Bulbar OnsetComment
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This email address is given as a contact [email protected] - no idea if it's worthwhile sending an email?Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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I've emailed plus emailed my mnd nurse who is forwarding my details. She said 9 have been recruited so far at Birmingham.
Diagnosed May 2021 bulbar onset als.Comment
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shelly21 👍🤞Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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I had an assessment appointment booked for 23rd March but it was cancelled due to the assessor having covid. They have not called me back to rebook. Reading this has reminded me to contact them.Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.Comment
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Sorry I've just seen this. Ellie gave you the correct email address, they are also really responsive to twitter messages. It was Suvankar Pal Consultant Neurologist who came back to me....on a weekend as well. Good luck!Originally posted by shelly21 View PostComment
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