New UIHC data registry to help patients with developmental disorders

A new UIHC data registry seeks to compile data from individuals with developmental disorders to provide specialized and comprehensive treatment.


Jordan Prochnow, News Reporter

Researchers at the University of Iowa have created a data registry for individuals with developmental disorders in order to provide specialized treatment and resources.

The new registry, the Neurodevelopment Research Study, collects information from volunteers with development disorders, including ADHD, autism, and different intellectual disabilities. It will help match patients to relevant research studies and help clinicians and other providers best understand how to help the individuals.

UI psychiatry researchers created the registry, which will allow them to partner with members of the UI Center for Disabilities and Development, the Iowa Neuroscience Institute, the UI Stead Family Pediatrics Department, and other institutions throughout the area as the registry increases. They will be able to share data and collaborate on projects.

Jodi Tate, a UI clinical professor of psychiatry and vice chair of clinical services in psychiatry, spearheaded the registry. Tate wanted to create the registry in order to form specialized programs for patients and find providers to work with patients in a more efficient and targeted way.

“We have researchers and clinicians trying to improve the population with different methods, so we wanted to combine all of these efforts,” Tate said. “To get to that goal, we need to engage folks who are willing to help be involved with the registry.”

Jacob Michaelson, a UI associate professor of psychiatry and communication sciences and disorders, said another goal of the registry is to formulate a standard of assessing patients across different developmental disorders, which will help ensure that the data are more uniform. He noted that there is a large amount of overlap among the disorders, so the registry will help them avoid focusing on a specific label.

“Usually, research is based on a specific diagnosis: autism, or Tourette syndrome, for instance,” Michaelson said in an email to The Daily Iowan. “But nature doesn’t respect our man-made boundaries, and anyone who lives with a neurodevelopmental disorder knows that they don’t fit into our neatly defined boxes.”

A benefit for patients involved with the study is that their information will be stored in the registry, which will decrease the number of times that they have to fill out repetitive paperwork about their disorders.

“We want to decrease the burden of participating by reducing the number of times a patient has to provide the same information,” Michaelson said. “I am both a researcher and a frequent research participant, and I am very familiar with the frustration of ‘Didn’t I already fill all this out?’ ”

The registry launched earlier this summer, and it seeks more participants. Clinical trials research associate Shannon Hampton said the registry will only be beneficial if volunteers are willing to be involved with the study.

“The registry is only as good as the information it collects,” Hampton said in an email to The Daily Iowan. “By reaching a large variety of people, we increase the odds of providing research [that] collaborates with helpful information and in return, gaining helpful research data for clinicians.”