New CDH Research Site Underway!

[Dawn Torrence Ireland]

CHERUBS has started on a new CDH research web site for our medical professional members, as well as for compiling and tabulating our Congenital Diaphragmatic Hernia Research Surveys.

Our medical professional members will have their own forum there to discuss CDH, and our parent members will be able to contribute to research!

It will become *the* CDH Research Site on the Internet! Estimated completion date is January 28, 2008!

[KimberlySwitzer]

wow thats great!!

[StephanieOlivarez]

That is wonderful news.
How exciting.
How many medical professionals are members of CHERUBS?
Will members be able to access the Medical Professionals site, or is it just for them?

[Dawn Torrence Ireland]

We have 150 medical professional in CHERUBS. Only they will be on the research forums... mostly because they won't feel free to discuss things if they have to worry about their patients reading what they post. Just like, they don't log on here to read what the parents write. :)

But there will be public forums for them to post current research studies and publications that you all can read too.

[StephanieOlivarez]

I think that is EXCELLENT.
How much research is being done? I don't know if that sounds right.......
Is these a special group that works on research for CDH? Where are they located? I know that is is being done....just interested to see where and how much? I hope that sounds right.
I am so interested to see Medical Professionals working on research for CDH.

[Dawn Torrence Ireland]

There are several hospitals doing research studies and there is a large CDH Interest group of doctors whose main interest is CDH. *But* there isn't nearly the amount of research going on that there should be.

[StephanieOlivarez]

How can we get more doctors to do research on CDH??
Has any doctor had a CDH baby that you know of?
This is very frustrating...not to have more research being done.

[KimberlyRichards]

Congrats Dawn!!!! That sounds great!!!!

Kim Richards

[LiseDill]

is that like if a cdh baby is born they can log on here and check out what new procedures is around?
( am I being thick??)

[Dawn Torrence Ireland]

It will be a place for all the medical links to research articles, where CDH specialists can msg each other or post to the forum (like we do here), plus all of our CDH Research Surveys can be filled out here and we can tally up the research results from them and our membership form. So all CDH parents can join in on the research surveys and hopefully, together, we can find a common denominator to the cause and prevention of CDH.

[LiseDill]

whoo hoo, very very very cool!!! That really is so awesome. So all our new parents can give their doctor this link!
How awesome for them and you

[Dawn Torrence Ireland]

Also, doctors will be able to post themselves asking parents to join in on research studies. No more having to go through us to post it.

And we're working on getting a few docs to do a Dear Doc section where you all can post questions. :)

Of course a thousand disclaimers will be there!

[StephanieOlivarez]

Gosh...this is AWESOME!!!!!!!!!!
That will be so informative to have a Dear Doc section.
I think it will benefit all of us.
LOVE IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[LiseDill]

I could have used that with Grace. I hated the care I rec'd. I would have loved to log on somewhere and say, "Can they really do this??"

[ChristieBrooks]

I don't know about anyone else - but I find the old research surveys fascinating to read. As moms touched by CDH we always are looking for that one thing or combination of things that could have caused the CDH to happen. Comparing the experiences, lifestyles and medical histories of those parents touched by CDH will hopefully someday help us to find that common denominator.

Christie