This site has great potential. It interfaces with Medline and gives you hard data. It will be much easier to explain with PD as an example. I clicked on the subject and was whisked away to the following (in order)-

1- A short and concise definition of PD. The info that Medline lists 13,296 studies on the subject involving 1,795,000 patients. (Note- those numbers seem high to me but I haven't read their criteria yet)
2- Top 5 treatments based on the amount of recent research. Took a minute to get an understanding there, but it basicly weights in favor of recent work and doesn't let areas of inquiry that were worn out 20 years ago skew things.
3- A FAQ that actually has some meat to it.
4- A "Community" section which is at present a listing of papers with an invitation to comment on them. The ones selected actually seem to reflect an intelligence behind them.
5- A section of recent studies for discussion.
6- The top treatments with "the best supporting evidence" plus a list of all treatments.
7- Alternative treatments ranked by the amount of research put into them.
8- Treatment effectiveness studies.
9- Treatments with the most studies.
10- Treatment safety studies.

That's just about half of it and I will leave it to you to explore. But one thing that caught my eye is a listing of the institutions producing the best work at this time. Cool.

There are a lot of opportunities for comment too. A patient might be heard there.

https://www.medify.com/conditions/pa...n%27s-disease#

Thanks. Just got back from MDS today and I’m debating whether or not to add another layer of symptom relief. I’ll be doing research all weekend…along with planting flowers!

Thanks. I spent a few minutes on will definitely have to go back and spend more time. Absolutely, agree, the site has a lot of potential

The site does look good and I found relevant articles easily. The bottom of Medify's pages states: "Medify is an Alliance Health Networks property." And Alliance Health which of course has commercial reasons for providing this information. As Alliance says on its site:


"Our Unique Approach

Alliance Health is different. Using the latest technology we create and host condition-specific online health networks where social networking is at our core—not an online publishing approach. Depth and relevance creates more value to consumers. AH is building powerful category killer user experiences as compared to the mass merchandisers of generic online health information. Creating more depth and relevance for the consumer and more powerful opportunities for marketers.

Our distributed social networks allow us to deliver more personally-relevant consumer content when it's needed and valued most. This makes our online networks the perfect environment for health marketers seeking to communicate with engaged consumers who are most in need of healthcare information, products and services.

Alliance Health operates the world's largest online social network for people with diabetes — Diabetic Connect — along with a growing number of condition-specific social networks. Each platform includes myriad ways for marketers to engage with consumers — from banner ads and offer programs to microsites, targeted e-mail campaigns and sponsored educational newsletters."
http://www.alliancehealthnetworks.com/unique-approach/

So let's watch for bias in any direction as we use any resources.

violet green

I appreciate your knowledge - just read up on medfly, great site!

Did you know that Canadian Whiskey has side effects? It's all off label. I should sue them.

Anyway, I type "Parkinson's Disease" to search the site. I type that in everywhere I go, because it explains everything. It's my access code to civilization.
So I go to this site, and type in my access code, and at the top, it tells me they have on file 13,333 Parkinson's studies, involving one million patients.

https://www.medify.com/articles/sear...%27s%20Disease

Is it even remotely possible that 13,333 clinical trials have been done for Parkinson's? Did we get much bang for the buck?

We are made to feel guilty that we don't volunteer enough for clinical trials. But it if there have been 13,333 trials for Parkinson's, it seems to be the only thing we do. Are we addicted to clinical trials?

Or am I mis-reading the stats?

And the one million patients - I assume that's an estimate of how many PwP there are in America, right ? or is that the number of Parkie volunteers? It would only be 75 Parkies per trial.

Did we put a million people through 13,333 trials and then come back and say we didn't find anything since levodopa spontaneously appeared out of nowhere 60 years ago?
I need a drink.

[QUOTE=Bob Dawson;989954]
So I go to this site, and type in my access code, and at the top, it tells me they have on file 13,333 Parkinson's studies, involving one million patients.

Or am I mis-reading the stats?
QUOTE]


It appears that the same studies appear multiple times, which increase their study and patient totals. For example, the Azilect ADAGIO study shows up 3 times with 1,176 patients.

Nevertheless, it appears to be a very comprehensive and usefule site.

A fascinating site. Huge amounts of info.

If they list the same trial 3 times, is that the 3 Phases?

I see now that when i list the number of patients from highest to lowest, there are a small number of trials that involve huge numbers of patients - possibly data-mining from existing hospital records instead of bringing in volunteers - or having patients fill out a questionaire.

the first one, for example, involved 93,240 patients, and it found no connection between head injury and PD.

With the rasagiline studies they were all post-hoc Phase 3 reports. With some studies, they did have different phase articles.

I also noticed the same thing you did. There are a number of longitudinal studies that had large data bases. As youi said, in many cases they are just data mining large record bases. Clearly, there have not been a million PWP who have participated in drug research. Their patients list included PWP who participated in observational studies as well as those who participated in clinical studies. You'll see that the large amount of the patients listed were in observational studies.

But, whether clinical or observational, they do say they have 13,333 studies on Parkinson’s. That's their claim.

The first Parkinson’s study on this list was in 1971. Then there was one study per year in 1976, 1980, 1981,1984. Then there were 2 in 1986, 4 in 1987, and 1 in 1988.
That’s 12 studies.

Then in 1989 it takes off. From 1989 to 2013, there are 13,321 studies. Over the 24 year period, that is an average of 555 Parkinson’s studies per year.

Of that total of 13,321 studies in 24 years, there are more in the recent years than in earlier years. In the past 5 years, there were 4,566 studies, an average of 913 studies per year.

An average of 76 Parkinson’s studies per month, every month, for the past 5 years.

And that’s published studies. Somewhere between 25% and 50% of clinical trials never get published. Observational studies, I don’t know.

But if they are doing 76 Parkinson’s studies per month, our disease is a major source of employment for the science community.

Did they ever retract the study from 8 years ago, about pickled herring being bad for PD? At the time, I wrote to the university and asked if it was the pickling or the herring. Could I eat pickled codfish? Could I eat herring if it was not pickled? Is it the fish, or the pickling?

They said it would require further study.

And then I never heard from them again. Maybe they are still working on it.