The world’s largest study on autism has just begun

Scientists and researchers are aiming to collect DNA and other vital information from 50,000 individuals with autism and their family members.

Known as SPARK (Simons Foundation Powering Autism Research for Knowledge), the project developers intend to create an online research database through responses from those with autism and their relatives.

Wendy Chung, the project’s principal investigator and the director of clinical research at the Simons Foundation Autism Research Initiative [SFARI], told Disability Scoop that while the program is free to those who sign up, the scientists conducting the research are highly knowledgeable.

“This is definitely a landmark study,” Chung said. “No researchers, no organization has ever attempted anything of this magnitude in autism before.”

During a pilot period of SPARK, researchers collected about 2,000 DNA samples from individuals with autism. Researchers estimate within the next three years, more than 50,000 DNA samples will be collected for analysis.

In a survey earlier in the year, researchers estimate nearly one in 47 U.S. children between 3 and 17 fall somewhere on the autism spectrum.

The causes of autism are unknown, but researchers believe there to be both hereditary and environmental factors, according to The Washington Post article.

Information collected through SPARK will be available to other scientists and researchers in the United States and around the world later in the year, according to an interview with Chung from Disability Scoop.

SPARK’s long-term mission is to serve scientists as a database to access to find suitable candidates for future studies. But in the near future, SPARK wants to provide answers.

From Disability Scoop:

In the short-term, Chung said she hopes that families can get quick answers from genetic testing and researchers may be able to draw immediate conclusions about some facets of autism from the information families provide. With time, however, the data collected could lead to larger innovations like medications or therapies, she said.

Participants are asked to complete a 20-minute online survey about their family and medical history. Those who wish to donate their DNA are sent a cup in the mail to provide a saliva sample and return, according to Disability Scoop.

Each donated sample will be examined through advanced genetic analysis. Due to the lengthy process to review each sample, families will only be notified of results if there is a determined hereditary cause for an individual’s autism, according to SPARK’s frequently asked questions.

Participation is free to those who sign up.

More than 20 medical institutions from across the country will be involved in the study funded by the SFARI, including the Children’s Hospital of Philadelphia, the Kennedy Krieger Institute, the University of Washington and Weill Cornell Medicine.

SFARI’s mission is to improve the understanding, diagnosis and treatment of the autism spectrum by funding unprecedented research, according to SPARK’s website.

Reach PublicSource intern Sabrina Bodon at sbodon@publicsource.org.