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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 07-03-16, 09:37 PM   #11
Allan
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Default ANOTHER WAY FORWARD - Research all about it!

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Inside Out on BBC One South tonight was all about Parkinson’s. The whole programme was very interesting but there’s a few minutes from 20mins 12secs that I found amazing ......

www.bbc.co.uk/iplayer/episode/b072xkcz/inside-out-south-07032016

Plus this interesting snippet that I came across earlier: www.youtube.com/watch?v=3BVjybJFkqo


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Old 07-03-16, 10:13 PM   #12
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Default Re: ANOTHER WAY FORWARD - Research all about it!

Quote:
Originally Posted by Allan View Post
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Inside Out on BBC One South tonight was all about Parkinson’s. The whole programme was very interesting but there’s a few minutes from 20mins 12secs that I found amazing ......

www.bbc.co.uk/iplayer/episode/b072xkcz/inside-out-south-07032016

Plus this interesting snippet that I came across earlier: www.youtube.com/watch?v=3BVjybJFkqo


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I saw this too it's amazing would this work with HD the same as Parkinson's do we think ?

Gabby
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Old 08-03-16, 01:13 PM   #13
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Default Re: ANOTHER WAY FORWARD - Research all about it!

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No, I don’t think so Gabby – but it’s very interesting reading and marvellous for people with PD.

The effects of DBS on the motor symptoms of Parkinson's Disease [short video]

Deep Brain Stimulation for Parkinson’s Disease

Parkinson’s Disease: Guide to Deep Brain Stimulation Therapy


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Old 20-03-16, 07:11 PM   #14
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Default THE WAY FORWARD - with Nancy Wexler

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If you want to know what it’s all about then listen to Nancy Wexler’s short videos here: www.makers.com/nancy-wexler

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Old 05-10-17, 10:58 PM   #15
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Default The way forward - or is it?

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Here we go again ... found in the depths of internetology.

A Faustian bargain: Could the key to the evolution of the human brain be found in a dreadful illness?

And another:

We Don’t Want to Know What Will Kill Us: Years of data on genetic testing reveal that when given the option, most people want less information, not more.

Well worth a read - maybe.
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Old 13-10-17, 06:34 AM   #16
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Default Re: THE WAY FORWARD - Research all about it!

Hi Alan

Really interesting - thank you

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Old 29-10-17, 07:50 PM   #17
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Default ANOTHER WAY FORWARD - Read all about it!

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I try to keep up-to-date with the relevant research but some of it is very difficult to find and expensive to buy when I do discover it. Here’s a condensed version of some current stuff:

Clinical Trials Corner: September 2017

Fifteen years of clinical trials in Huntington’s disease: Too many clinical trial failures

Objective: To investigate the trends in Huntington’s disease therapeutic development by analysing interventional clinical trials publicly registered for the last 15 years.

Conclusions: Although HD is a rare condition, 95 trials were so far registered in HD. We found a large attrition rate at an earlier trials phase and a very high trial failure rate in trials at later phases of drug development. There is huge gap in drug discovery and clinical development methods in HD that warrants improvement.

An open label study to assess the feasibility and tolerability of rilmenidine for the treatment of Huntington’s disease

Abstract: Preclinical data have shown that rilmenidine can regulate autophagy in models of Huntington’s disease, providing a potential route to alter the disease course in patients.

Summary: this study has shown that rilmenidine appears to be relatively safe and well tolerated in clinically manifest Huntington’s disease. Whether it slows down disease progression through an effect on autophagy is unresolved, but the data from our trial would encourage undertaking further studies with this agent in larger, randomised, placebo-controlled trials.

Here’s a journal that allows the downloading of some research papers: Journal of Huntington's Disease

At this point in time, though, I’m on the lookout for a good, uncomplicated communication device or app that will allow two-way communication in an easy-paced way. Not just the usual: “I want a drink”, “I’m hungry”, etc. We want to continue with humour, laughter and fun. I wonder if there’s any research in these areas?

Webinar to Look at Laughter and Humour as Ways to Help Deal with Huntington’s

It’s not exactly clinical research but it’s better than anything I’ve seen recently.

“… adding humour to Huntington’s patients’ lives can help improve their symptom management, emotional wellbeing, ability to cope with adversity, and social and work interaction.”

LAUGHTER, JEST FOR THE HEALTH OF IT

The effect of humour and mood on memory recall

www.cal-ccra.org/assets/Convention_Handouts/2012_Handouts/buxman%20k%20handout.pdf

Is laughter the best “medicine”?


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Old 01-11-17, 11:26 PM   #18
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Default WAVE PRECISION-HD Research Trial - Read all about it!

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These trials were announced in July: the "PRECISION-HD1 and PRECISION-HD2 in Patients with Huntington’s Disease” trials are beginning in Canada - then the USA and Europe will become involved, the total number of hd-individuals in the trial being 50. That number usually decreases, for a variety of hd and non-hd reasons, by 4-6 during trial stages - this has happened in the IONIS trials.

www.businesswire.com/news/home/20170717005291/en

www.wavelifesciences.com is different from other research labs in that it doesn’t use mice [or any other animals] in the initial research. But before human trials begin they do test the chemicals on non-human primates to ensure that the testing on hd-individuals will be safe. They don't mention the outcome for the non-human primates.

Their trials are targeting the mutant gene alone whereas the IONIS trials are targeting both the mutant and the healthy gene. Many people have suggested that the healthy allele has an, as yet, unknown role to play in our human make-up - so why attempt to "silence" it?

Click Learn more under CORPORATE PRESENTATION here: http://ir.wavelifesciences.com/phoenix.zhtml?c=254233&p=irol-irhome

Slides 14-20 in the downloadable pdf file have the specific HD content.

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