CDH International is proud to introduce the new CDH Patient Registry!
Our natural history study database has been updated to a REDCap server and our organization is working with The World Federation of Associations of Pediatric Surgeons (WOFAPS) to utilize our research data in collaborations with DHREAMS, the CDH Study Group, Massachusetts General, the NIH’s KidsFirst Database, the Zani Lab, and other research centers for Congenital Diaphragmatic Hernia.
It’s taken years of hard work and a good team to restructure all the data and we are now ready to work. Everything is HIPAA and GDPR compliant and built over many discussions to make sure that it’s compatible with other research centers.
Every member of CDH International whose child is over 1 year of age or deceased received an e-mail from firstname.lastname@example.org (check your spam folder). Follow the instructions in the e-mail to access your information.
Did you not receive the e-mail? Has your e-mail changed? Former member? Have questions? E-mail email@example.com
Not a member?* Join for free at http://cdhboards.org or through the CDH Phone App. Once you join, you will be given access to the registry. You will also gain access to our events, forums, Facebook groups, and more.
Forgotten your password to the forums? Reset it at http://www.cdhboards.org/login.php?do=lostpw
*ALL CDH parents and patients can participate in this registry from anywhere in the world. If you have been banned from CDHi for any reason, you can still participate in this research. E-mail firstname.lastname@example.org
About the CDH Patient Registry:
- Patients over 1 year of age and those who are deceased can participate.
- All data is owned by each individual patient and can be edited or removed at will. CDH International does not own your data, we are merely research data caretakers.
- The registry is HIPAA and GDPR compliant.
- We have a security team to keep our server safe, as does WOFAPS.
- WOFAPS does not have access to your data.
- Permission is required to utilize your data in research collaborations.
- All data on this registry is de-identifiable. Each patient is assigned a number and there are no names in the registry.
- You must be a member of CDH International. Every patient is vetted and given a number to gain access to the registry.
- It should take less than 1 hour to fill out the registry questionnaire. The average time spent is 20 minutes.
- Information included in this registry:
- Patient medical history from pregnancy to current / death
- Family medical history
- CDH & neonatal information
- ECMO, FETO, Gentle Ventilation, Oscillating Ventilation and other interventions
- GI & Feeding
- Adult care of CDH patients
- Your opinions on research, information, awareness and advocacy efforts in the CDH community
- Other CDH charities within ACDHO can use the registry to collaborate with universities in their countries on their patient groups. Free of cost to further CDH research.
- The CDH Patient Registry backbone is being utilized to create patient registries for Gastroschisis and other like Congenital Anomalies. Free of cost to help other children.
New questions have been added so even if you completed it before, please answer the new sections.
Everyone who fully completes the questionnaire will be entered into a monthly raffle for the next 3 months:
- February 28 – $200 Amazon / Visa gift card
- March 31 – $300 Amazon / Visa gift card
- April 30 – $500 Amazon / Visa gift card
Finish in February and you’re in ALL 3 RAFFLES. Finish in March and you are in 2 raffles.