ChARMTracker.com: Children's Autism Recovery Map

Check out the Children's Autism Recovery Map called, CharmTracker a web-based application for autism treatment management.

  The "Treatment" category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

Comments

[Pramila Srinivasan]

Thank you for your comments. I am the Founder of this site and have a child with autism. I am very encouraged by the discussion and level of interest.

Regarding questions of security, right now it is password protected but we are in the process of protecting with SSL (with encryption). (I am an engineer and I understand the importance of securing the site).

We will not sell any information and we have no affiliation with any pharma/supplement company or any manufacturer. No data will be shared without your explicit consent.

My goal for ChARM is to
(1) serve as state-of-the-art tools for parents and physicians working with our kids (both data tracking/visualization and social networking)
(2) bring all the anecdotal information into one system to that we can have the numbers speak for themselves. I encourage persons and organizations involved in all aspects of autism treatment to use ChARM, regardless of the treatment modality.
(3) to serve as a platform for research and specifically, hypothesis generation. We hope we can, through this system, be able to generate hypotheses that can prompt more rigorous clinic studies, and eventually a standard of care.

Please read my blog for updates on our vision for ChARM, and please continue to give feedback on what you would like to see us build.

http://blogs.charmtracker.com/

Thank you for your support,
Pramila Srinivasan
Founder of MedicalMine, the maker of ChARM.

[rileysmom]

Oh and kathleen, thanks for the vote of confidence. I don't know HOW some people sit back and just let things happen around them. I have to be proactive in this...to me there no other way to be. I think we need to switch docs at the Cleveland Clinic to the one that Kim mentioned her girls are seeing. The one I have isn't active enough for me OR Riley. That's what I'm all about!!

[rileysmom]

Sounds like a good idea, I guess but I'm with pp. Not sure about the security or the "big brother" idea of this. However, it would also be good for observation in the whole recovery recording. The children that are getting better...proof on one page. I'll keep watching this though to see how it turns out.

[michael framson]

A couple of questions for Centennial:

Many children who reside on this very,very long spectrum we call ASD, have fine and gross motor coordination difficulties. From your perspective, is there a remedy that might improve or eliminate this condition? And second, is this coordination difficulty separate to the spectrum you are familiar with?

[kathleen]

well, without the prpoer security, adn maybe with it, it gives me the creeps, big brother and all:(

And Riley's mom,
you will recover your son. God bless:)
Thank goodness for your son that your attitude is not to sit back and believe that it is what it is for life!

[ejsmom]

LOVE the idea, don't love the risk. Sell software and let us anonymously upload to ARI or something. I'm techno illiterate but I suppose some such thing is possible. For now - I have spreadsheets and a journal/pen, photos and video.

I want to defend AoA! AoA isn't inducing skepticism or jadedness. I think AoA just gives us a place to release it, w/o being that "black helicopter" whacko.

Are ASD parents more cynical, distrustful and suspicious? Hell, yes! We'd better be. If we'd been that way to start with, we wouldn't be here now. Also, that's how we are helping our kids. Not buying the BS anymore.

The fault lies not with parents or AoA, but with those who LIED to us and hid info as CYA insurance and used our kid's health and futures and lives for profit.

[AL]

I love the idea, but the site lacks even the most basic security measures. They don't even use SSL. (nevermind, the nerds know what I mean) It's by no means a finished product.

That being said, this is definitely something that I hope continues to progress. I've always thought about building something like this, but honestly lack the personal skills to achieve my vision. So I'm glad someone or some group is finally putting something similar together.

The other question that remains is "who will see this data?". I'd like a better understanding of that as well.

I've been watching it for a few weeks now, and I'm hoping for improvements. We'll see. As I said, I really hope they keep going with this.

-AL

[rileysmom]

centennial
Just for cleaification someone can not really 'recover' or 'cure' autisim. i have it now and i will have it untill i die.
**********************************
Could you stop raining on my parade now? I'll be damned if I'm not going to "recover" or "cure" my son. You can have it till the day you die BUT MY son will not.

[centennial]

Just for cleaification someone can not really 'recover' or 'cure' autisim. i have it now and i will have it untill i die. However there are many treatments for some of the difficulties resulting from autism. From personal experience not all of them work or make sense. If it does not make sense talk to your doctor. If it still does not make sense i would not consider it further.

[Jack R.]

Well, it does seem to be a really nice tool.

Damn my AoA-induced skepticism and jadedness.

Hmmm, I just thought of a great research study I could probably get funded...Are parents of children with autism more cynical and distrustful of authority than parents of NT typical kids???

[Angie]

This looks like it would be a GREAT resource for all of us...however, like the previous poster, how private will our info be once they start (I am assuming they will be, since there is a spot on their site that states 'researchers: info coming soon')selling/giving info out to the researchers or even other doc's/therapists/etc.

I am ALL for an honest and fair site like this to finally get some REAL info together for researchers to be able to see 'Hard or real' data that all of our 'opposers' are requesting...

however, I would like to know HOW our info would be shared...would anyone researching/etc be given our full names/info? Is there a system to keep our PRIVATE (like our full name) info private, maybe giving each record a 'number' with just profile info?

Also, what if any systems will be in place to research the professionals/docs/researchers to make sure their intentions are honest and that they are not going to use the info improperly...could anyone pay a fee to be able to research the site?

I guess, I would really love to use the site..and would totally be OK with research being done with our info...but I would also love to know ahead of time what safe-guards are in place, or not in place...

Anyone currently an avid user who can let us know how its gone? Anyone know about the privacy-issues? Please post here and share...

Thanks!
Angie
Mom to Ethan, Alex, and Megan

[Jack R.]

Looks pretty good, but I'm a little afraid of putting lots of personal medical information up.

Is Lee Silsby running the site? Are they going to be sending me emails like, "We noticed your son is low in X nutrient, you may be interested in purchasing X supplement."