As a first step to better understand the patterns of intestinal malrotation, our team built a national patient-generated registry, to turn the patient stories in the online community into data. We created the Intestinal Malrotation Patient Outcomes and WEllness Registry (IMPOWER) where patients answer survey questions related to their diagnostic and treatment journeys. IMPOWER captures a detailed patient-reported history which includes symptoms and testing prior to diagnosis, surgical and non-surgical management, and symptoms after diagnosis and/or surgical management. IMPOWER also captures family history and co-occurring conditions. Patients can sign up to participate in 6 month updates, and can be on our list to be contacted for future research opportunities. Click here to learn more about IMPOWER.

Our team has a Patient Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EACB-30046) to build capacity for research related to intestinal malrotation. We use a patient-centered approach to bring caregivers and patients living with intestinal malrotation together with researchers and clinicians across multiple specialty areas to establish the Intestinal Malrotation Patient and Clinician Team (IMPACT) and to develop an actionable patient-centered comparative clinical effectiveness (CER) Research Agenda to work toward a better understanding of intestinal malrotation. Additionally, the project team is creating tools and resources for other rare disease patients and patient advocacy organizations to build capacity in CER. Click here to learn more about our IMPACT award.

Some medical conditions are not easy to diagnose because symptoms are ambiguous or easy to confuse with other conditions, which contributes to diagnostic errors. This is especially the case for rare diseases including intestinal malrotation, because physicians may not have much experience with the condition. In this project, we are examining whether patient characteristics (race, sex, age) and the structure of patient-physician network ties are associated with delays in diagnosis of medical conditions with ambiguous symptoms. The findings from this project can lead to better healthcare interventions that could reduce health disparities related to diagnostic errors. This study is funded by the National Science Foundation as a Human Networks & Data Science Research (HNDS-R) award. Click here to read more about our HNDS-R award.

Patient-generated registries (PGRs) collect data directly from patients. However, patient-generated data captured from online support groups may not be reflective of the true overall population because it might be those more likely to be struggling and seeking support. Our study team has previously implemented a national PGR, the Intestinal Malrotation Patient Outcomes and WEllness Registry (IMPOWER), to longitudinally capture patient data to characterize the natural history of malrotation before and after diagnosis and treatment. In this research study, we are exploring the representativeness and validity of the IMPOWER PGR by obtaining clinical records and comparing those records to patient-reported data in our registry. Our goals of this study are to 1) Characterize the natural history of intestinal malrotation at the University of Oklahoma and compare findings to that of our national PGR, 2) Explore methods of bidirectionally validating self-reported medical information from the IMPOWER PGR, and 3) Define patient-centered outcomes and potential unmet needs of patients living with malrotation. This project is funded by the Presbyterian Health Foundation New Investigator Seed Grant.

In this research study, we are using electronic medical records from TriNetX Research Network to examine the long-term gastrointestinal outcomes of intestinal malrotation patients post-surgical treatment. The Ladd procedure is considered definitive corrective management for intestinal malrotation; however, research related to outcomes after the Ladd procedure focuses primarily on immediate post-surgical outcomes and the risk of volvulus. We are using TriNetX to explore gastrointestinal outcomes at various time points after the Ladd procedure.