Centering Patients, Advancing Science: The Intestinal Malrotation Research Alliance at Hudson College

On Rare Disease Day, observed each year on February 28, the Hudson College of Public Health is proud to highlight one of its leading research centers dedicated to improving the lives of individuals affected by a rare and often misunderstood condition: the Intestinal Malrotation Research Alliance (IMRA).

Housed within the Department of Biostatistics and Epidemiology and led by Dr. Sydney Martinez, associate professor of epidemiology, IMRA is a growing, collaborative research effort focused on advancing understanding and improving care for people living with intestinal malrotation. For Martinez, the work is both professional and deeply personal—her daughter was diagnosed with intestinal malrotation, an experience that revealed firsthand the gaps in research, long-term data, and patient-centered guidance for families navigating the condition.

Intestinal malrotation is a rare congenital anomaly that occurs when the intestines do not rotate properly during embryonic development, resulting in abnormal positioning within the abdomen. While some individuals are diagnosed in infancy, others may not receive a diagnosis until later in life. Symptoms can vary widely but often include vomiting—either bilious (green or bright yellow) or nonbilious—abdominal pain or distension, constipation, and poor weight gain.

The standard treatment for intestinal malrotation is a surgical procedure known as the Ladd procedure. Historically, this surgery was believed to resolve symptoms. However, emerging research indicates that many individuals continue to experience ongoing gastrointestinal challenges after surgery, and some require additional procedures. Despite these realities, long-term outcomes and chronic symptoms have been under-recognized, in part because the condition is so rare.

“Because intestinal malrotation is uncommon, it is often overlooked and poorly understood,” Martinez said. “That can lead to delays in diagnosis and gaps in follow-up care. There is a critical need for rigorous, patient-centered research to better understand outcomes and guide treatment decisions.”

IMRA was established in partnership with West Virginia University and the University of Oklahoma Health Campus to address those gaps. The Alliance reflects a truly interdisciplinary approach, bringing together public health researchers, clinicians, and patient advocates. Dr. Darren Bodkin, a specialist in Neonatal-Perinatal Medicine at OU, has been instrumental in strengthening the connection between patients and clinicians within the Alliance. His clinical expertise and commitment to collaboration have helped ensure that research priorities are grounded in real-world care experiences and that families’ voices are meaningfully integrated into the work.

At the heart of this effort is the Intestinal Malrotation Patient and Clinician Team (IMPACT), a group composed of patients, caregivers, clinicians, and researchers working side-by-side to shape the research agenda. Through the development of a patient-centered comparative clinical effectiveness research (CER) framework, IMPACT ensures that the questions being studied reflect the real-world experiences and priorities of those most affected.

This approach not only strengthens the science—it builds trust, fosters community, and ensures that research translates into meaningful improvements in patient care.

As IMRA continues to grow, so does its impact. By combining epidemiologic expertise, biostatistical rigor, and lived experience, the Alliance is redefining how rare disease research can and should be conducted.

On Rare Disease Day, Hudson College of Public Health celebrates the work of the Intestinal Malrotation Research Alliance for their commitment to advancing knowledge, elevating patient voices, and improving outcomes for individuals and families affected by intestinal malrotation.

Learn more about the Intestinal Malrotation Research Alliance at: https://malrotationresearch.org/