Over the two weeks we have had a lot of interest in our post regarding the sweetener, Mannitol and preclinical studies suggesting that it prevents the clustering/aggregation of the Parkinson’s disease associated protein, alpha synuclein (Click here to read that post).
Such high levels of traffic had us scratching our heads as to why the sudden interest.
Yesterday the reason became very clear.
Today we are following up the Mannitol post with an update about some of the interesting developments.
On the Thursday December 15th, Channel 1 (MABAT) in Israel ran the following news article:
This presentation was in association with a new start-up called ‘CliniCrowd‘ which is a “crowd sourcing platform exploring disease treatments that Pharma companies have no interest to investigate or promote”.
CliniCrowd is a social impact company that has built an online platform, which provides a registry for people to sign up to and share personal experiences of researched nutriments.
Sounds interesting – how does it work?
The community at CliniCrowd “searches for nutriments that are safe for human consumption, recognized by FDA as GRAS (Generally Recognized as Safe), and have scientific evidence (in research papers) to be used to hopefully enhance wellbeing and possibly impact symptoms of diseases” (Source: CliniCrowd).
People with Parkinson’s disease are able to voluntarily sign up on the registry and start reporting back about their use of a particular ‘nutriment’, particularly what benefits or side effect that they may be experiencing. In turn, CliniCrowd will present its findings as is to the crowd.
The sweetener Mannitol is the first nutriment being proposed by the company.
After signing up on the website, “patients voluntarily register for the registry and enter their health information, purchase and administer the products themselves, and enter treatment outcome data on the website” (Source: CliniCrowd).
Cool idea. Where can I find more information?
In addition to the TV news article above and the company’s website (CliniCrowd.info), numerous videos have also been posted online, including this one introducing the scientist behind the original Mannitol research, Prof Danny Segal (who also sits on the Advisory board for ClinicCrowd):
There are also testimonials from people already taking part in the Mannitol-Parkinson’s disease assessment:
What happens to my personal information?
And remind me again what is Mannitol?
Mannitol is a colourless sweet-tasting, poorly metabolized crystalline alcohol sugar that is Food and Drug Administration (FDA)-approved as an osmotic diuretic agent.
In plain English: it is a sweetener. Stick it on your tongue and it tastes like sugar.
Usually made from fructose and hydrogen, Mannitol increases blood glucose to a lesser extent than sucrose, and so it is commonly used as a sweetener for people with diabetes or sugar intolerance. The fact that Mannitol can be produced artificially is the only reason that it is often referred to as an ‘artificial sweetener’, but it does not fall into the same class as proper artificial sweetener, such as aspartame.
Is Mannitol safe?
The short answer is yes. FDA approved and it is widely used in many processed foods.
The longer answer (specific to Parkinson’s disease) is more complicated.
A critic of the CliniCrowd concept may point out that the research supporting the beneficial effects of Mannitol in Parkinson’s disease is limited to just one peer-reviewed journal paper. And this is currently true. Supporters, however, would counter that Mannitol is widely available and already being privately tested by many individuals with Parkinson’s disease, so why not offer a forum where they can provide their personal feedback.
In addition, Mannitol is added to a wide variety of processed products (simply check the packaging of your shopping for ‘mannitol’ or food additive number e421 – Food Standards Agency, 2014). On top of this, Mannitol is naturally occurring. Cauliflower, for example, contains 3 grams of Mannitol per every 100 grams of weight. We are all consuming it on a daily basis.
A health warning here – Mannitol should not be taken in excess or abused as it can have an osmotic effect (in particular, attracting water from the intestinal wall). Consumed in excess, it will cause diarrhea, abdominal pain, and excessive gas. In addition to intestinal problems, Mannitol has also been associated with worsening heart failure, electrolyte abnormalities, or low blood volume. Importantly, we also do not know what effect it may have on absorption of L-dopa and other Parkinson’s disease medications. Thus, please discuss any change in your treatment regime that you may be considering with your doctor before doing so.
What does it all mean?
As the company suggests on their website, CliniCrowd is in essence a protest against big pharmaceutical companies who have and still are ignoring possibly effective therapeutic agents simply because they are un-patentable (and thus providing no protection from competition). Such treatments do not justify the cost of clinical trials for those companies, as the profits would be minimal.
Some of these un-patentable medications are currently being tested in clinical trials set up, funded and run by Parkinson’s disease charity groups, such as Parkinson’s UK, the Cure Parkinson’s Trust, and the Michael J Fox Foundation. The cost of those trials, however, is great. In addition, they are long and heavily regulated processes – it can take years to determine if a medication is effective. On top of this, there is always the possibility that a treatment which works for one individual won’t work for another. Across a large clinical trial population this effect can result in any positive result being cancelled out, and the trial failing to show any positive outcome at all.
CliniCrowd is not proposing an alternative system to the clinical trial process. It is simply providing a rapid method of filtering and identifying the agents that exhibit some level of benefit in humans with Parkinson’s disease. It is critical to understand that what CliniCrowd is proposing can not constitute or replace a clinical trial. Since the participants on the CliniCrowd registry would not be randomly allocated to a treatment or control group (nor would they be assessed by blinded clinical assessors), this process could not be described as scientifically valid. Any treatments that exhibit beneficial effects on the CliniCrowd website would still need to go through the clinical trial process to be considered thoroughly tested and ready for regular clinical use.
There is obviously the potential for the placebo effect to jump in here. Given that participants know that they are taking a particular treatment and are largely self assessing themselves, there is the possibility for people to start experiencing miraculous benefits that may have no pharmaceutical explanation. And the placebo effect is particularly strong in Parkinson’s disease when compared to other conditions. So this must always be kept in mind when considering the results of any treatment being taken by people on the registry.
Here at the SoPD, we are always looking for new treatments and innovative ways of speeding up the process of getting therapies to the clinic. In addition, we are keen to see more research on Mannitol and (if validated) have it tested in clinical trials. A platform like CliniCrowd could provide a Parkinson’s charity with some initial human validation data that would justify a clinical trial, saving precious time and money and allowing them to focus on treatments that have exhibited some kind of effect in humans with Parkinson’s disease.
Thus, we are very curious to see how the CliniCrowd registry system will work out, and we look forward to the discussion that will result from this innovative step forward.
EDITOR’S NOTE: Full disclosure – The TV news article and CliniCrowd website was brought to our attention by the people running the platform. Given that they are not selling a particular product and simply trying to do some good for the Parkinson’s community, SoPD is presenting an unbiased and balanced review of their efforts here. SoPD is in no way benefitting (financially or otherwise) from this presentation, and is providing it here to the Parkinson’s community for educational purposes.
In addition, under absolutely no circumstances should anyone reading this material consider it medical advice. Before considering or attempting any change in your treatment regime, PLEASE consult with your doctor or neurologist. SoPD can not be held responsible for actions taken based on the information provided here.
The banner for today’s post was sourced from Qualifirst