About Us
We envision a health system where intestinal malrotation is never missed and always matters.
Our mission is to improve survival, healthcare delivery, and quality of life for individuals with intestinal malrotation through patient-centered and evidence-based research.
Our Mission
Our mission is to improve survival, healthcare delivery, and quality of life for individuals with intestinal malrotation through patient-centered and evidence-based research. We strive to provide accurate information for patient and medical communities through research, clinical guidelines, and the development of a shared language between patients and healthcare providers. We aim to improve assessment, care, and support for malrotation patients across the lifespan.
Our Values
Team Science: We value the collaborative research efforts of patients, caregivers, clinicians, and scientists of all backgrounds and disciplines who share the goal of improving healthcare for malrotation.
Transparency: We value openness in communication, rigorous methodology, accountability, and trust among stakeholders.
Equity: We value research that ensures equitable outcomes for all individuals.
Autonomy: We value the empowerment of individuals to make informed decisions in their healthcare journeys and strive to create a research culture where diverse perspectives are valued and included.
Our Story
The Intestinal Malrotation Research Alliance was started by researchers who became caregivers to children born with intestinal malrotation. We first established the Intestinal Malrotation Patient Outcomes and WEllness Registry (IMPOWER) to capture patient experiences before, during, and after diagnosis of intestinal malrotation. The registry has grown to 255+ registrants and has led to a scientific publication, presentations, and research funding. We are guided by an Intestinal Malrotation Patient and Clinician Team (IMPACT) of advisors made up of patients, caregivers, clinicians and researchers across multiple disciplines who have shared goals of advancing science and improving care for individuals with intestinal malrotation.
Intestinal Malrotation Patient and Clinician Team (IMPACT)
The Intestinal Malrotation Research Alliance is guided by an advisory board made up of patients, caregivers, researchers, and clinicians across multiple specialty areas including surgery, gastroenterology, nursing, clinical psychology, nutrition, epidemiology, and sociology.
Caregivers and Patients (CAPs) Team
In addition to our IMPACT team, we have a formal network of Caregivers and Patients (CAPs) mobilized to inform the IMPACT about their lived experiences and research priorities around intestinal malrotation. CAPs receive training in research methods and participate in listening sessions to share their stories and research priorities.