We've been hard, hard at work for months now on the Congenital Diaphragmatic Hernia Research Database site!!! Once completed, this site will survey all CDH parents and researchers and allow research statistics to be tabulated on the fly!
This CDH Research Study is the only long-term, in depth CDH study of it's kind in the world. It is the largest database of CDH patient, family medical history, pregnancy history and long-term care data. Together with the CDH Study Group and their database of 1000's of CDH patients immediate care and medical histories, we hope to learn information that will help all babies born with Congenital Diaphragmatic Hernia and learn how to stop CDH from happening to babies of the future. It is 100% confidential, server secure and HIPPA complient.
This is CDH research happening right NOW! CDH Research that every patient and every family can join in to help - regardless if your child is a survivor or non-survivor or whether you have DNA samples available (as many parents of non-survivors do not). Every CDH family can participate. Every CDH family can make a difference!
Below is some information tabulated from our survey that includes members who joined CHERUBS by April 30, 2009. The following data only includes primary patient information - it does not include secondary memberships (grandparents, additional parents, etc) or CDH researchers memberships.
This data includes 2431 CDH patients. It does not include all other non-patient or secondary members.
CDH Patients In CHERUBS Membership By State:
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CDH Patients In CHERUBS Membership By Country:
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Want to talk to other CDH families in your state or country? Please contact your State or International Representative or visit our CDH Forums.
BASIC STATISTICS
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CHERUBS Membership Survival Rates 1985 - 2008
This data did not include patients not yet born, those patients who did not include their birth dates and those who joined while expecting but whose data hasn’t been updated since birth. This does not show the CDH survival rate – it does show that Survivors and Parents of Survivors are consistently joining CHERUBS 2 to 1 over Grieving Parents.
SIDE AND TYPE OF CDH(click to view full graphic:)
CDH Repairs(click to view full graphic:)
CHERUBS has been tabulating CDH Research Studies since 1997. Now, with the help of 1000's of CDH families and researchers around the world and with the other organizations of ACDHO, we are so, so proud to announce that our years of hard work will be able to benefit the CDH community even more.
This site will be FREE for ALL to use. CHERUBS does not wish to be paid for it's use or to "own" or trademark Congenital Diaphragmatic Hernia Research. You do not have to be a member of CHERUBS to participate. ALL CDH families, organizations, researchers and the general public will be allowed to access and use this information and research. All we care about and want is finding the cause, prevention and best treatment of CDH.
This is only just a teeny tiny bit of what this CDH Research Study will include. There will be 4 separate studies:
1. CDH Patient Information - created from CHERUBS membership form data. This is our basic patient information, some of which is shown above. Pregnancy history, CDH diagnosis, side of CDH, type of CDH, hospital stay, CDH repairs, other birth defects, complications, etc.
2. In Depth CDH Research Survey - 12 very detailed pages of maternal exposures during pregnancy, pregnancy histories, family medical histories, chemical exposures, birth defects, genetic issues, lung capacity, long-term therapies, pregnancy testing, labor and delivery, CDH repairs, complications and much, much more.
3. CDH Support Survey - survey on how CHERUBS can better help CDH families and what other services are needed
4. CDH Researchers Survey - taken from CHERUBS membership forms for medical professionals, this helps doctors and nurses to better help CDH patients and their families.
We are very, very excited about this project and look forward to unveiling it soon!
Want to read more about the type of data we're researching? You can view our 2000 CDH Research Survey Results at http://cdhsupport.org/members/pafiledb/uploads/9ad72a8a5cc10c79f02590fa08ec1029.pdf
Over the next few weeks we will post more sneak peaks! Stay tuned!!
