A little business help goes a long way for kids with developmental disorders

With help from the Technology Development Fund, a commercial kit to help children prepare for blood draws was launched.

Ellen Hanson

When I tell people I work at the Technology and Innovation Development Office at Children’s (TIDO), they usually think I work to commercialize patented blockbuster drug candidates. But many of the most satisfying projects I help promote are innovations that don’t involve as much risk, time and investment, yet make a big difference for patients. Commercializing these innovations can help the greater good, and is part of what propels me to work at a licensing office at a pediatric hospital.

And sometimes it doesn’t take much to help them along.

Case in point—TIDO support, and in particular TIDO’s Technology Development Fund (TDF), recently helped bring to market a way to make routine medical procedures less stressful for kids with autism spectrum disorders (ASDs) and their parents.

Raising a child with autism can often bring increased challenges and stress for families. For example, children with ASD can have increased anxiety compared to typical children when introduced to new activities that are not within their everyday routines. This can make things like doctor’s appointments, which don’t occur on a regular schedule, quite difficult. If the child also requires some type of procedure, such as having a shot or a blood draw, the difficulty can escalate quite quickly.

Recognizing this problem, Ellen Hanson, PhD, director of the Neurodevelopmental Disorders Phenotyping Program at Children’s, and her colleagues created what they call the “Blood Draw Learning Kit” – essentially, a method and kit for helping parents and doctors prepare children for blood draws so that the actual event creates as little anxiety as possible. “A lot of interventions are out there, but no one had put them together in a standardized manner and tested them to see whether they were able to be easily implemented by families and, of course, if they actually work,” says Dr. Hanson.

The program was based on past behavioral research as well as the “social story” concept developed by Carol Gray, education specialist and founder of the Gray Center for Social Learning and Understanding, to help children with autism prepare for anxiety-producing events.

To test the program, the team ran a quasi-randomized trial of children already taking part in one of Hanson’s genetic studies looking at other aspects of ASD. It proved quite successful, on average helping increase the success rate of blood draws in families who used the kit from 86 percent to 96 percent. A 10 percent increase like this may not seem like a huge improvement, but to a hospital, eliminating repeat appointments for the same procedure saves money and time, while also improving the overall patient and family experience.

At right about the time the study was finishing, Michele and Jeff Walker, owners of Bee Visual LLC — a company that creates visual support products for children and their families—were looking to create visual support tools to help children prepare for medical procedures. They had used visual supports for medical procedures with their own son, who has learning differences, and realized that if it worked for their child, maybe they should develop similar visual supports that could benefit all children.

Michele and Jeff found Dr. Hanson through Lenny Rappaport, MD, chief, Division of Developmental Medicine at Children’s, and colleagues at the Autism Consortium. Upon meeting, all of them instantly saw the similarities in what they were trying to accomplish, and decided to work together to develop a commercial kit to help kids at Children’s and beyond.

Learning KitTo raise the capital needed to turn Dr. Hanson’s original research kit – essentially a Ziploc bag filled with medical tools used for a blood draw and a photocopied social story she and her Children’s colleagues had written – into a family-friendly commercial product, the group turned to the TIDO-administered Technology Development Fund (TDF). Receiving a small grant from the fund, they worked with Alan Yen, PhD, licensing manager at TIDO, over a six-month period to create the product.

“I was surprised and ecstatic that TDF supported a small clinical tool to help patients even though the kit will not bring in millions of dollars in revenue like a groundbreaking scientific discovery could”, said Dr. Hanson.

With the funding, Bee Visual could take Dr. Hanson’s original social story text and create visuals to go along with it. “Creating visuals is harder than you think,“ said Michele. “It is an art. The right graphic needs to be interpreted correctly by a child.” The team also obtained feedback from Carol Gray herself. ”She was immediately interested in helping kids out,” said Dr. Hanson.

The small amount of money from the TDF helped the collaborators move this technology from a Ziploc bag to a prototype to a product. “This kit would not have become a product without the Technology Development Fund support,” said Michele. “We are not a large corporation. We are a mom and dad looking to do the right thing and help other families that are in the situation we were once in.”

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