Patients served by new registry for developmental disorders

Data hub for autism and other developmental disorders will help researchers, doctors, and patients.

Psychiatry leaders at University of Iowa Hospitals & Clinics have built a new autism data hub to connect the efforts of clinicians and researchers looking to better understand developmental disorders and improve treatments.

The online registry collects information about participating patients, including diagnoses, medical information and outcomes, as well as demographic information. It serves as a secure directory for researchers looking for potential study participants. Clinicians using the registry will be equipped with valuable, detailed information about their patients. 

This is the only registry offered in the state that includes patient information for all developmental disorders, including autism, intellectual disability, attention-deficit/hyperactivity disorder (ADHD), and others. The registry team decided to include all relevant disorders since these conditions tend to co-occur.

Roughly one in 59 children has been diagnosed with autism, according to the Centers for Disease Control and Prevention (CDC). In Iowa, there are approximately 30,000 people with intellectual disability, half of whom also have a mental illness, such as mood disorders, anxiety disorders, and others. 

Jodi Tate, MD, UI clinical professor of psychiatry and vice chair for clinical services in psychiatry, is spearheading the initiative in hopes of integrating data collection on patients with developmental disorders with the daily clinical work done by providers caring for those patients.

“Clinicians and researchers want to advance clinical care so that we can improve the lives of folks with these disorders,” she says. “The registry is a place where all this information will come together.”

Patients who choose to participate may conveniently access the registry online and fill out basic personal and demographic information, as well as answer questions relevant to their diagnosis. With permission from the participant, the registry will also compile other pertinent information from their medical record. This will help match individuals to active and approved research projects.

The registry also aims to ease the burden on patients who are accustomed to filling out the same questionnaires with every new clinician they see or with new studies they join. 

The development of the registry and data protection procedures has been approved by the University of Iowa research ethics board to ensure patient information is appropriately protected. 

Psychiatry will partner with members of the UI Center for Disabilities and Development, the Iowa Neuroscience Institute, the UI Stead Family Department of Pediatrics, and ultimately with institutions across the Midwest as the registry grows. 

“We have so much to learn from each other,” Tate says. “If we could combine our efforts, the patient is the one who is going to benefit the most.”