NOTRE DAME — The nation’s largest study to discover genetic links to autism is coming 9 a.m. to 3 p.m. July 20 to University of Notre Dame’s Jordan Hall reading room, and researchers are hoping to find Michiana residents to take part in it.

The Simons Foundation Powering Autism Research (SPARK) project is being carried about by faculty and staff at Rush University, the academic branch of Rush University Medical Center in Chicago.

SPARK’s goal is to collect DNA samples from 50,000 individuals with autism and, ideally, their biological parents. Participants can be any age and can land anywhere on the autism spectrum, said Holly Lechniak, outreach director at Rush’s Autism Assessment, Research, Treatment and Services Center.

“It’s a pretty hefty goal, and we’re definitely making our way towards that, but families are still learning about and engaging with it,” she said.

The swabbing sample and 20 minutes of information-gathering can help researchers discover genetic markers of autism.

Knowing markers can help individuals with autism find identity, she said. It also allows those individuals, their families and physicians to improve the developmental trajectory of babies and young children with autism through individualized care.

SPARK’s website states that early intervention and therapies for toddlers with autism have been effective in improving language skills, social interaction and IQ levels.

Lechniak gave an example of the impact knowing markers can have. A middle-aged couple came into one of SPARK’s testing sites and found out they had a genetic variant they were not familiar with.

“Now, having that information, they’re better able to understand what their life trajectory looks like [and] what their treatments and interventions that are going to be most helpful for them,” she said.

Three years ago, when SPARK launched, 80 genetic markers of autism had been identified. Now, through the project, that number is 160 and counting with 20,000 participants still needed, Lechniak said.

“In terms of understanding the genetics of autism, we really still do this day don’t know enough,” she said. “We know a lot but not enough.”

Lechniak was clear to say, though, that the project’s findings would not lead to genetic manipulation.

“We’re not, by any means, trying to cure autism, trying to remove genes or do any modifications like that,” she said. “What we’re trying to do is better understand autism so we know how best to intervene and treat autism for those individuals. We know one size doesn’t fit all. There is not one genetic marker or one genetic reason for autism. It’s definitely a multi-faceted disorder.”

Barbara Calhoun said she knows the multi-faceted nature of autism firsthand. As the outreach coordinator and professor of the Boler-Parseghian Center for Rare and Neglected Diseases, she said some people with rare diseases also fall on the autism spectrum.

“We may not be doing research on autism specifically from our center, but we will better understand those diseases that have children that have intellectual disabilities,” she said.

Calhoun, other center staff and a team of interns will be helping SPARK when it comes to Notre Dame.

Aside from researching rare and neglected diseases, the center connects those with rare diseases to centers of excellence, patient service organizations and other resources. The findings of SPARK’s study could add another layer of assistance to individuals they serve, she said.

“I hope that it will provide us with some information that we can share with our patient families in terms of resources that are available to autism and autism spectrum patients,” Calhoun said.

Any qualifying individuals in the U.S. can take part in research at any moment, Lechniak said.

While participants can attend SPARK’s research day at Notre Dame and other locations it is traveling to this year, they can also participate online at sparkforautism.org/rush.

SPARK’s site allows individuals to sign up to have cotton swab tests delivered to their homes.

The geographic, racial, ethnic and autism spectrum diversity of participants SPARK’s online and on-site can generate is needed so that the project can discover a full breadth of genetic markers that in turn can help the breadth of people in the U.S., Lechniak said.

“It is super important that we have a representative sample from across the United States,” she said. “We do try to reach out to areas that don’t have a site geographically accessible to them, so that we can make ourselves a little more accessible and helpful.”