AMN EASIER
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Clinical Trial

Just received this email:

Dear Mr Monkeybus,

Our team was informed that you are interested to participate in the above clinical trial.

To be able to go ahead, will you kindly ask your GP or your attending consultant to refer you to our consultants. Please see below of details:

Dr Robin Lachmann and Dr Elaine Murphy

Inherited Metabolic Specialist Consultant

Charles Dent Metabolic Unit, Box 92

National Hospital for Neurology and Neurosurgery

Queen Square

London

WC1N 3BG

Telephone: 02034483213

Fax: 02072092146

For data protection, your GP can send the referral through the above Fax number.

Please also request eGFR Blood Test.

If you require further information, please don’t hesitate to contact me.

Thank you very much.

Kind regards,

Erla

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... and, what did you do? I think this is probably the Minoryx trial. Worth going on, you can report back.

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Yes, clicked send before I finished my post.

Obviously, I'm going to go on the trial. Cannot be just me. Has anyone else received an a mail about this?

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Yes it is the Minoryx trial. At the recent ALD Life weekend Dr Lachmann (top guy and my consultant also) said no trial for cannabis users... or girls 😒

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Be aware that to go on this trial will almost certainly mean that you will have to discontinue the other things you are taking. Or else they can't pronounce on which drug is producing a specific result.

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Dr Lachmann is my regular consultant and he is good.

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“Dear Mr Monkeybus...” lmao!!’

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I am going to join MIN-102 clinical trial in Germany. The first meeting in July.

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I have also been contacted by Dr Lachman’s team about the trial. I’m not sure whether this was because I registered my interest on the minoryx website, or if they are just contacting their patients who meet the criteria. I live in Scotland, but had a referral to see Dr Lachman a year or so ago so am in their records.

Am currently waiting to be given an appointment for a half day of pre-screening to see whether I qualify or not (fortunately I am not a cannabis user, or a girl).

Will be interesting to see what comes of it, and also to hear how others get on.

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Hi! My husband and I are in Scotland too. I have a question......other than endocrinologist, do you or have you seen a consultant for your AMN regularly?

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Hi Vanliz. I see a consultant Neurologist in Glasgow (Maria farrugia) and my endocrinologist is Colin Perry. Who do you see?

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We hadn't seen a consultant neurologist for 25 years (😠!!!) But now have one, a Dr Mackay.

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Sorry....that was abrupt. We're in the process of formally complaining at the original consultant who diagnosed my husband. He has been disgracefully ket down by the system to his detriment. Thankfully this new one is trying to make amends. Nay be all too late though

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I wonder what the reasons are for one not being a cannabis user.

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It would appear the much-vaunted medical marijuana revolution hasn't quite reached the Charles Dent Metabolic Unit yet.

I've heard it's illegal, though they should tell the residents of East London. Would come as quite a shock.

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Mr Bus...you're damn funny:much-vaunted medical marijuana revolution....

thanks for the laugh

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I got an email on Friday afternoon. I tried to ring the nurse twice but I never managed to speak with her. I have left my number on a voicemail and replied to the email leaving my phone number too. I have printed off, read and filled in all of the forms. Hopefully I will speak to the hospital on Tuesday. From what I read you need to attend hospital 9 times over a 2 year period. They said they will cover travel and accommodation costs. Not sure this would stretch to the USA MB! I see nothing on the questionnaire that would exclude me. The prohibited drugs mentioned are mostly statins.

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I didn't receive an email ... the nurse called me. It was the afternoon after I had my annual consultation with Dr Murphy at NHNN and I was told to go back in for the pre-screening in 3 days. We had talked about the trial in my consultation but I didn't realise it would happen so soon (we had talked about it a year ago too)!

That was last week. Pre-screening involved blood, urine tests, neurological assessment, general health check, signing some forms and then some physical tests... walking 130 metres and balancing for 20 seconds with eyes closed. The latter wasn't fun. You also need a recent MRI (had mine last week too).

As long as everything this OK I go back for the baseline in a few days. That will involve all of the above again plus the drug or the sugar pill. Will report back when done.

In terms of what you are and are not allowed to take, I was told that I need to take note of any drugs that I use. Even the paracetamol I had for a headache yesterday. I don't think it is very surprising that cannabis use excludes you from the trial - this is pretty standard in any drugs test.

Apparently the study has already begun in some places (Netherlands for instance) but not yet in the US.

Have fun!

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I'll see my doctor next week, get my referral faxed through to Lachman.

How long does the test take? I don't really know.

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The pre-screening takes a morning. I was in at 8:30 and out by about 11:30. Then I had to go back a few days later for an MRI scan (if your annual one has been done within 6 months I don't think you need another one). My baseline has been postponed by a week because not all the pre-screening results are back so I've not had that yet but from what I've been told that will be an early start (fasting bloods) and then go on into the early afternoon.

It all takes place in a private ward in the hospital and you have your own room (+bed, bathroom).

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I had my referral faxed through today. Thought I'd ring up and find out what's what.

Two years, as had been mentioned before. I asked if they'd pay for a hotel for two years. Yes. How about that?

Haven't been called in for any pre screening yet. Not sure I can be away for that long.

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