The Global Research Alliance for Congenital Anomalies (GRACA), an initiative conceived on the counsel of the World Health Organization, is dedicated to assembling an international cohort of congenital anomalies organizations. The aim is to formulate a universal Standard of Care, as well as establish uniform measures of morbidity and mortality, benefiting millions of patients who share comparable medical challenges.
This global initiative is spearheaded by CDH International, which along with the Global Gastroschisis Foundation, played a vital role in GRACA's inception in 2020. Despite initial delays due to the pandemic, the alliance is now forging ahead with full momentum.
As the Fiscal Sponsor of GRACA, CDH International provides crucial support, including patient registries, training to other patient communities, and acts as an intermediary with medical associations and government bodies.
Currently, GRACA includes collaborations with noteworthy entities such as:
- CDH Community (CDH International and all Alliance of Congenital Diaphragmatic Hernia Organizations charities)
- Gastroschisis Community
- Omphalocele Community
- World Health Organization
- March of Dimes
- Kid’s First Registry (NICHD)
- Centers for Disease Control and Prevention (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
- University of Manitoba
We are excited to announce that many more communities, government organizations, surgical associations, and foundations are joining us and will be declared in the near future.
Our Immediate Objectives:
- Revamping the legacy CDH Forums to include other patient communities, providing them with an alternative to social media for communication.
- Utilizing this platform to facilitate the transition of patients onto registries.
- CDH International will serve as a host, while each patient community will manage its forum with its own administrators and moderators.
- Adapting the framework of the CDH Patient Registry (with patient data removed) to develop Natural History Registries for each of the patient groups, none of which presently possess such registries.
- Offering these registries free to other communities, inclusive of a 10-hour training following setup.
Our Collaboration Model:
- WOFAPS will host the data, while CDH International handles the registry creation.
- One organization from each patient community will manage their respective Patient Registry.
- Individual patients retain data ownership. Neither GRACA, CDH International nor any organization claims it.
- All patient data is de-identified, with registries being fully compliant with HIPAA & GDPR regulations.
- These registries will provide valuable data to GRACA members and researchers to develop a minimal Standard of Care for Congenital Anomalies.
- By utilizing these registries, we can work closely with other registries to expedite research progress.
- Communities will have the opportunity to collaborate with universities, labs, and other registries on research projects.
- Registries are designed to be compatible with NIH, NHS, and ERN governmental registries.
A few other significant goals are in the pipeline and will be disclosed in due time.
As you can appreciate, this venture is an ambitious one but holds the transformative potential to safeguard and enhance the lives of millions of children.
We are presently seeking support from corporate entities and government sponsors to help bear the costs associated with these registries: their construction, security, training provision, and the recruitment of patients for participation.
Supporting This Incredibly Important Work
At this time, GRACA will begin with 6 Patient Registries and as funding allows, we will expand to include all others.
Funds donated to the GRACA Initiative will cover:
- RedCAP Programming ($45,000 per year)
- Research Management ($45,000 per year)
- Security Costs for Registries
- Meeting Costs for Collaboration
- Medical Conferences & Research Presentations
- Medical Association Membership Fees
Funds designated for specific registries will go to help cover the costs of each Patient Community:
- Registry Set Up ($10,000)*
- Registry Training ($5000)*
- Ongoing Registry Management ($35,000 per year)
- Ads to Recruit Patient Participants
- Patient Education & Materials
- Annual Patient & Research Conference ($25,000)
For additional information, please reach out to us at firstname.lastname@example.org.
* CDH International is not charging any fees to any other Patient Communities and will create the registries and train for free; however, CDH International is a patient charity as well, and it will be a burden to absorb these costs, so any help is greatly appreciated.
Management and Programing include all set-up programming, translation programming, collaborations, filings, abstracts, and serving on over a dozen research committees. More help is required so that CDH patients do not lose research and resources by using staff time on GRACA.
WOFAPS is graciously hosting the server at no cost.