The Global Research Alliance for Congenital Anomalies (GRACA) was founded on the advice of the World Health Organization to bring together like Congenital Anomalies to create global Standards of Care and Standards of Measurements and Mortality for millions of patients with similar medical issues.
Led by CDH International, GRACA was created with co-founding organization, the Global Gastroschisis Foundation in 2020. The pandemic put plans on hold but now alliance is moving full-steam ahead.
CDH International is the Fiscal Sponsor of GRACA, supplying patient registries and training to other patient communities and working as liaison to medical associations and government entities.
- At this time, the following are confirmed members of GRACA:
- CDH Community (CDH International and all ACDHO charities)
- Gastroschisis Community
- Omphalocele Community
- World Health Organization
- March of Dimes
- Kid’s First Registry (NICHD)
- Center for Disease Control (CDC)
- The World Federation of Associations of Pediatric Surgeons (WOFAPS)
- Global Initiative for Children’s Surgery
- G-4 Alliance
- DHREAMS / Columbia University
- Zani Lab / University of Toronto
- Univ of Manitoba
Many more communities, government organizations, surgical associations and foundations are coming on board and will be announced shortly.
Current Goals:
- Transform the old CDH Forums to add the other patient communities.
- Giving other patient families a non-social media platform to communicate
- Used as a springboard to onboard patients onto registries
- Each patient community will have it’s own set of admins & moderators. CDH International is just the hosting entity.
- Use the skeleton of the CDH Patient Registry (patient data removed) to create Natural History Registries for each of the other patient groups, none of which currently have patient registries.
- Registries are free to the other communities, with 10 training hours after set up
- WOFAPS is hosting the data, CDH International is building the registries
- Each patient community will have 1 organization that will admin their Patient Registry.
- All data is owned by individual patients. Not GRACA, CDH International, or any organization.
- All patient data is de-identified.
- All registries are HIPAA & GDPR Compliant
- Collect data to work all of the other GRACA members and researchers to create a minimal Standard of Care for Congenital Anomalies
- Use the registries to work with other registries to advance research as quickly as possible.
- Communities will be able to use their registries to collaborate on research projects with universities, labs and other registries
- Registries will be compatible with NIH, NHS and ERN governmental registries
There are several other large goals that are not public yet.
As you can imagine, this is a massive undertaking but one that will undoubtedly help to save the lives of millions of children.
At this time, we are looking for corporate and government sponsors to help cover the costs these registries for all the patient communities; to build them, secure them, train teams, and recruit patients to participate.
You can donate to research at www.cdhi.org/donate
You can reach us at dawn.ireland@cdhi.org for more information.
