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Thread: Congenital Diaphragmatic Hernia Research Survey

  1. #1

    Congenital Diaphragmatic Hernia Research Survey

    CHERUBS is very proud and excited to announce that, after 15 years of very hard work, the first in depth on-line Congenital Diaphragmatic Hernia Research Survey is now active!

    This research survey will look at family medical histories, patient medical histories, exposures, complications, other birth defects, feeding issues, repairs and much more.

    1000's of eligible CDH families received a survey participation invitation.

    We are working with Dr. Kays from All Children's, Dr. Chiu from Toronto Sick Kids and Dr. Chung and the wonderful DHREAMS team out of Columbia University to tally up information from this survey for several different research projects. This will allow us to look at all the pieces of CDH - genetic, surgical, neonatal and family... with a long-term overview of patients that currently are not being followed after release from the hospital. As well as family history long term (more children, more cherubs, etc).

    We hope to publish in our first medical journal before the end of the year.

    To participate, you must be a member of CHERUBS. This is part of our HIPPAA compliance to keep this survey accurate and maintain your medical information security. We have an HIPPAA compliance expert now on our Board of Directors whose sole job is to protect your data!

    All information is strictly confidential. Every cherub is given an ID number and your child's name will not be released or published in any way.

    All eligible member participants received an invitation to participate. If you are an official member, your cherub has wings or is a survivor over 1-yr-old and you did not get an e-mail, please e-mail us at

    If you are not a member, please sign up for free at and send us an email at and we will get you an invite sent.

    Findings from this survey will be published on our web site once we have surveys filled out by 1000 families. Help us to reach that goal quickly!

    This is an enormous first step to working together as a whole CDH community and finding the cause, prevention and best treatments of CDH. We hope you are all as excited as we are!


    CHERUBS Executive Board of Directors
    CHERUBS Parent Advisory Board
    CHERUBS Medical Advisory Board
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.

  2. #2
    So happy to read this big step for research purposes.
    Amanda Mother of Liz born 09/09/2002 with LCDH,Emily 05/27/2005. Liz was diagnosed at 12 weeks in uetro 90 percent of left diaphragm missing. Gortex patch put in at 3 days old. Ever abdominal organ other then kidneys herniated. Born at 38 weeks, 6 lbs 11oz. Born in Hamilton ON. Hospitalized for 6 weeks. Rehirniated at age 6 and 3 surgeries age 10 almost lost my Cherub again. Duplication cysts on her stomach. Reflux and on going GI issues.

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