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Thread: New CDH Research Site Underway!

  1. #1

    New CDH Research Site Underway!

    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!
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  2. #2
    wow thats great!!
    Mommy to Haylee 01/26/2004 and My cherub Asher 07/04/2007- LCDH discovered at 18 weeks- medical termination at 24 weeks. Hypoplastic left lung and right jaw- pulmonary hypertension- Secundum type ASD- left liver lobe- stomach- appendix- and small bowel herniated www.freewebs.com/babyasher Ashers webpage http://www.youtube.com/watch?v=dxS8F4dkHjE Ashers video montage

  3. #3
    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?
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  4. #4
    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.
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  5. #5
    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.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  6. #6
    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.
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  7. #7
    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.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  8. #8
    Congrats Dawn!!!! That sounds great!!!!

    Kim Richards
    Kim Richards Mom to Olivia Raine 08/31/02-09/19/02 LCDH- Ecmo 19 days Mom to Alyssa 3/30/00 & Carsen 02/19/04

  9. #9
    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??)

  10. #10
    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.
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

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