Imagine a world where high-quality data on the critical elements of diagnosis and care for rare and complex prenatal conditions were “living,” and the best analyses from manuscripts were continually updated in real time to support both patient counseling and research. The Clinical Outcomes Data Archive (CODA) brings this vision to life at our Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment (CFDT).
The late Lori J. Howell, DNP, MS, RN, former CFDT Executive Director, long held a goal for CHOP to offer meaningful, real-time, risk-adjusted outcomes information for fetal patients and their families. To achieve this vision, a new approach to data management was designed by Matthew Goldshore, MD, PhD, MPH, a pediatric surgery fellow with CHOP’s Division of Pediatric General, Thoracic and Fetal Surgery, and CFDT Business Manager Tom Reynolds, MFA, MBA. The technology powering CODA was developed by an interprofessional team led by Reynolds, and workflows integrating electronic health record (EHR) data with manually collected and clinically reviewed information were set in motion. Within this framework, the CODA team created a large-scale ‘living’ analytic-grade database, which now supports real-time clinical outcomes reporting across the CFDT.
How CODA Works
- The CFDT’s multidisciplinary subspecialists and interprofessional team collaborate to develop questions using consistent data definitions to be asked of primary source clinical documentation within CHOP’s EHR. Question sets are developed separately for common experiences and disease-specific experiences.
- Every night, the CODA server queries EHR data to identify if any of the events of interest from the cross-disciplinary questions the team has developed have happened for any patient in the registry and if so, extracts relevant EHR data and deploys tasks for the CODA team. For example, structured data from fetal ultrasounds or newborn care records is extracted from CHOP’s EHR into the CODA platform.
- Every day, the CODA team, which is made up of epidemiology specialists, pre-clinical research assistants and medical students, manually abstracts unstructured data — information otherwise unavailable for analysis — from narrative reports from patient charts into the CODA platform.
- Advanced data processing hosted in CODA also allows for computer-aided automated abstraction. In one example, more than 10,000 ultrasound records were instantly abstracted for faster, large-scale data collection. In another use case, neurodevelopmental follow-up information is automatically abstracted following longitudinal assessment.
- Fetal attributes documented in the mother’s medical record during pregnancy are connected to the baby’s CODA identity, creating a comprehensive view from fetal development to postnatal life.
- All data, both extracted and abstracted, is given a second review by subject matter experts to enhance data accuracy and reliability. Once data is validated, it is stored in the analytic-grade locked reporting database.
- Dashboards display tables and graphs (developed while writing manuscripts) which are updated in real time, enabling clinicians to monitor and adjust treatment plans based on the latest data.
CODA in Action
CODA is a transformative tool reshaping how we counsel patients. For example, a family was referred to our center after being told their unborn baby had a poor prognosis due to congenital diaphragmatic hernia (CDH). Maternal-fetal medicine specialist Juliana Sanchez Gebb, MD, referenced outcomes data from 100 pregnancies with similar prognoses in CODA. The data showed that all the babies were thriving. Sharing this information helped the family make the decision to continue the pregnancy in the dedicated care of the team at CHOP.
Gregory Heuer, MD, PhD, Director of Prenatal and Neonatal Surgery in CHOP’s Division of Neurosurgery, uses CODA data on head growth to guide postnatal care of children who have undergone prenatal surgical repair of myelomeningocele (MMC). The platform enabled him to create a reliable method of understanding if/when a child should receive a ventricular shunt to relieve hydrocephalus.
Data from CODA also integrates with the Digital Coach platform our Neonatal Resuscitation Team uses to guide resuscitation events in our Special Delivery Unit. CODA empowers the Digital Coach to provide up-to-date individualized newborn stabilization plans and debriefing summaries following birth, enhancing coordinated clinical decisions in real time.
Academic and Research Impact
In addition to enhancing patient care, CODA expedites clinical and translational research, significantly reducing the time required to answer pressing questions. By contributing their unique experiences, each patient plays an invaluable role in advancing our understanding of rare conditions. CODA allows us to achieve a scale of data collection not possible before; in the past, we could only follow a select few patients with certain conditions, but now we can honor and learn from all patients.
CODA staffs much of its workforce with individuals preparing for advanced clinical training. In their “gap year” with CODA, research assistants benefit from unparalleled exposure to world-leading faculty across many disciplines. The program has launched trainees to Harvard, New York University, Rush, Thomas Jefferson and beyond to become the next generation of healthcare professionals.
A detailed manuscript about CODA’s creation and goals was recently published in the international journal, Fetal Diagnosis and Therapy.
CODA Highlights and Achievements
Now in its third year of operation, CODA has made remarkable strides impacting both clinical care and research. Key highlights:
- 15,000+ patients enrolled
- Complete foundational data collection of all babies born in our Garbose Family Special Delivery Unit since 2013
- More than 15 million data points collected and validated
- More than 50 research initiatives supported in fiscal year 2024
- More than 25 manuscripts submitted across disciplines to leading peer-reviewed journals
- 36 abstracts accepted and/or presented at prominent academic conferences in fiscal year 2024
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Imagine a world where high-quality data on the critical elements of diagnosis and care for rare and complex prenatal conditions were “living,” and the best analyses from manuscripts were continually updated in real time to support both patient counseling and research. The Clinical Outcomes Data Archive (CODA) brings this vision to life at our Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment (CFDT).
The late Lori J. Howell, DNP, MS, RN, former CFDT Executive Director, long held a goal for CHOP to offer meaningful, real-time, risk-adjusted outcomes information for fetal patients and their families. To achieve this vision, a new approach to data management was designed by Matthew Goldshore, MD, PhD, MPH, a pediatric surgery fellow with CHOP’s Division of Pediatric General, Thoracic and Fetal Surgery, and CFDT Business Manager Tom Reynolds, MFA, MBA. The technology powering CODA was developed by an interprofessional team led by Reynolds, and workflows integrating electronic health record (EHR) data with manually collected and clinically reviewed information were set in motion. Within this framework, the CODA team created a large-scale ‘living’ analytic-grade database, which now supports real-time clinical outcomes reporting across the CFDT.
How CODA Works
- The CFDT’s multidisciplinary subspecialists and interprofessional team collaborate to develop questions using consistent data definitions to be asked of primary source clinical documentation within CHOP’s EHR. Question sets are developed separately for common experiences and disease-specific experiences.
- Every night, the CODA server queries EHR data to identify if any of the events of interest from the cross-disciplinary questions the team has developed have happened for any patient in the registry and if so, extracts relevant EHR data and deploys tasks for the CODA team. For example, structured data from fetal ultrasounds or newborn care records is extracted from CHOP’s EHR into the CODA platform.
- Every day, the CODA team, which is made up of epidemiology specialists, pre-clinical research assistants and medical students, manually abstracts unstructured data — information otherwise unavailable for analysis — from narrative reports from patient charts into the CODA platform.
- Advanced data processing hosted in CODA also allows for computer-aided automated abstraction. In one example, more than 10,000 ultrasound records were instantly abstracted for faster, large-scale data collection. In another use case, neurodevelopmental follow-up information is automatically abstracted following longitudinal assessment.
- Fetal attributes documented in the mother’s medical record during pregnancy are connected to the baby’s CODA identity, creating a comprehensive view from fetal development to postnatal life.
- All data, both extracted and abstracted, is given a second review by subject matter experts to enhance data accuracy and reliability. Once data is validated, it is stored in the analytic-grade locked reporting database.
- Dashboards display tables and graphs (developed while writing manuscripts) which are updated in real time, enabling clinicians to monitor and adjust treatment plans based on the latest data.
CODA in Action
CODA is a transformative tool reshaping how we counsel patients. For example, a family was referred to our center after being told their unborn baby had a poor prognosis due to congenital diaphragmatic hernia (CDH). Maternal-fetal medicine specialist Juliana Sanchez Gebb, MD, referenced outcomes data from 100 pregnancies with similar prognoses in CODA. The data showed that all the babies were thriving. Sharing this information helped the family make the decision to continue the pregnancy in the dedicated care of the team at CHOP.
Gregory Heuer, MD, PhD, Director of Prenatal and Neonatal Surgery in CHOP’s Division of Neurosurgery, uses CODA data on head growth to guide postnatal care of children who have undergone prenatal surgical repair of myelomeningocele (MMC). The platform enabled him to create a reliable method of understanding if/when a child should receive a ventricular shunt to relieve hydrocephalus.
Data from CODA also integrates with the Digital Coach platform our Neonatal Resuscitation Team uses to guide resuscitation events in our Special Delivery Unit. CODA empowers the Digital Coach to provide up-to-date individualized newborn stabilization plans and debriefing summaries following birth, enhancing coordinated clinical decisions in real time.
Academic and Research Impact
In addition to enhancing patient care, CODA expedites clinical and translational research, significantly reducing the time required to answer pressing questions. By contributing their unique experiences, each patient plays an invaluable role in advancing our understanding of rare conditions. CODA allows us to achieve a scale of data collection not possible before; in the past, we could only follow a select few patients with certain conditions, but now we can honor and learn from all patients.
CODA staffs much of its workforce with individuals preparing for advanced clinical training. In their “gap year” with CODA, research assistants benefit from unparalleled exposure to world-leading faculty across many disciplines. The program has launched trainees to Harvard, New York University, Rush, Thomas Jefferson and beyond to become the next generation of healthcare professionals.
A detailed manuscript about CODA’s creation and goals was recently published in the international journal, Fetal Diagnosis and Therapy.
CODA Highlights and Achievements
Now in its third year of operation, CODA has made remarkable strides impacting both clinical care and research. Key highlights:
- 15,000+ patients enrolled
- Complete foundational data collection of all babies born in our Garbose Family Special Delivery Unit since 2013
- More than 15 million data points collected and validated
- More than 50 research initiatives supported in fiscal year 2024
- More than 25 manuscripts submitted across disciplines to leading peer-reviewed journals
- 36 abstracts accepted and/or presented at prominent academic conferences in fiscal year 2024
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Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment