Why Is It Taking So Long To Find A Cure For Parkinson's Disease?
 

My thanks go to Maxkas on the HealthUnlocked/Parkinson's Movement forum for drawing my attention to this interesting article [1]:

"Why Is It Taking So Long To Find A Cure For Parkinson's Disease?"

Let me add another few reasons:

Little attempt has been made to utilize the abilities of PwP to do the research, rather than just be the subjects of the research.

For some, safer, types of potential therapy, it makes sense to introduce it on a provisional, at cost basis, once it has been tested for safety, but before it has been tested for effectiveness; monitoring the effects as you go along. (I'm thinking of things like Rytary here, not DBS.)

The desire to get a patent distorts the research away from testing naturally occurring substances.

While making sure that a thread based on the article doesn't already exist I came across a pointer to it on NewsBot, 04-22-2016. But, there doesn't appear to be any comment on it.

Reference:

[1] Soania-Mathur, HuffPost Living Canada, 16th April, 2017.
(Originally posted 04/21/2016)
Why Is It Taking So Long To Find A Cure For Parkinson's Disease? | Dr. Soania-Mathur

John

John, thanks for posting this. Soania is a friend of mine and is by far one of the most inspirational person with Parkinson's that I know. She was diagnosed at age 27, yet has still be able to obtain her license and
practice medicine for 12 years, raise a family, write books and dozens of articles and become one of the most active advocates for the PD community in the world. I highly suggest everyone read some of her many writings. Her website for Designing a Cure:
Designing A Cure for Parkinson's Disease

With regard to your other comments, I do agree. However, change is happening, albeit it may be slow. Patient involvement in the research process is improving. Clinical trials funded by MJFF and CPT require the trial steering committees to have patient representatives. Safety review boards (SRBs) are now including patient representatives as part of the group. Many journals now include patient reviewers (I am a reviewer for the British Medical Journal which has changed policies). PCORI will only fund research that has active patient involvement and then patient reviewers at completion. Many pharmaceutical companies are now including patients as part of their research steering committees for both pre-clinical studies as well as there ongoing and post trial reviews. In fact, Soania and I are on the same patient advisory council, along with about 10 other patients, for a biotech company that specializes in neurological drug research.

My point is that change is happening. What we would all like to see is it happen faster. For that, we need more patient involvement putting more pressure in the places we want to see changes made. For instance, I will not donate funds to any PD organization that supports research unless they require the grant recipients to include patients on the trial team. Patients are basically like minority groups and we need to actively fight for our rights. It's the only way change past practices that allow us to be seen but not heard.

Anyone on this board who would like to become more active in the research process, whether it be on an advisory council, trial steering committee, research reviewer, etc., can contact me. I would be happy to give you more information on how you can do this.

Gary

I think that this is a hard question; my contributions to this field have been very minor - a couple of papers about a-synuclein from a biophysical rather than clinical perspective.

I was impressed by a talk given by somebody with both a PhD and medical qualifications. He made the point that PD, like cancer, is not "one disease" - rather it, like cancer, is a multitude of conditions with some clinical signs in common.

He argued that, because of this, it will be necessary to tailor a (possibly unique) combination of treatment modalities for each individual with those clinical signs - working out how to do this will not be an easy job.

Yes, we have ...
 

had many discussions on this board about at least 2 types of PD, tremor dominant and non motor function dominant named PIGD by certain people.

Tremor dominant was best as progressed more slowly. PIGD people ended up with a tremor over the years and quicker progression so a double whammy there.

From my experience and my Neuros age of PWP seems to differentiate the symptoms more than expected.

Take care,
Neil.

Or maybe there isn't always a loss of dopa cells just not working dopa cells.
Or maybe there are other neurotransmitters involved besides dopamine.
( wouldn't that be embarrassing after decades of research and millions invested)

Joking apart, whilst I'm in agreement with all the above what's needed is imagination as much as intellect, the ability to dare, to think outside the box that's when scientific breakthroughs occur ! Not tweaking and modifying the same theories for 60 years. It strikes me there is a fundamental flaw somewhere.

Wow I wrote that calmly ! Without drama probably because I've reduced the dopamine agonist, so called because Glaxokline think it's the most likely explanation for how it works..!

Parkinsonia, a land of smoke and mirrors.

Stay frosty people

Nigel

John's idea of "provisional" is a great idea especially on those promising off-labellers which make us wait way too long. Make some noise folks! Will