Advancing Science.
Improving Care.
We use team science and a patient-centered approach to research in order to advance knowledge and improve patient care for intestinal malrotation.
The Intestinal Malrotation Research Alliance
The Intestinal Malrotation Research Alliance is a research collaborative started in partnership with the University of Oklahoma Health Sciences and West Virginia University. We are a growing group of patients, caregivers, clinicians, and researchers working together to advance our understanding of intestinal malrotation to improve patient care.
Intestinal Malrotation is a gut rotational anomaly
Intestinal malrotation is a rare congenital anomaly, or birth defect, that occurs when the intestines do not properly rotate during embryonic development, leaving the intestinal anatomy in an abnormal position. Symptoms of intestinal malrotation vary from person to person but often include vomiting, both bilious (green or bright yellow) or nonbilious, abdominal pain or distension, constipation, or poor weight gain (failure to thrive). The standard treatment for intestinal malrotation is a surgical procedure called the Ladd procedure. While this was once thought to resolve symptoms, more recent evidence suggests that the majority of individuals with malrotation continue to experience varying levels of gastrointestinal symptoms and some require additional surgical procedures. More research is needed to better understand the various outcomes for individuals with intestinal malrotation.
More research is needed for patients and their clinicians to make informed healthcare decisions
Intestinal malrotation is rare enough that it is often overlooked and poorly understood. This leads to delays in diagnosis and an under-recognition of chronic gastrointestinal symptoms following surgical treatment. As a rare condition, the patients and caregivers often become the experts; therefore, we need a patient-centered approach to research.
The Intestinal Malrotation Research Alliance has established the Intestinal Malrotation Patient and Clinician Team (IMPACT) made up of patients, caregivers, clinicians, and researchers working together to guide research efforts through the development of a patient-centered comparative clinical effectiveness research (CER) agenda that prioritizes research questions relevant to patients.
We envision a health system where intestinal malrotation is never missed and always matters.