Decoding thousands of individuals’ complete DNA sets—i.e. genomes—to identify genetic markers may provide new tools for those working to improve diagnosis, treatment and quality of care for persons on the autism spectrum.

At a recent Capitol Hill briefing entitled “the Human Genome and Precision Medicine,” and hosted by Autism Speaks in collaboration with the Congressional Coalition on Autism Research and Education (CARE), researchers provided an update on developments in precision medicine and an overview of the MSSNG Project, an impressive initiative that is already halfway through sequencing 10,000 genomes from families affected by autism.

MSSNG, pronounced “missing,” deliberately omits vowels to symbolize the missing biological information about autism that the project is designed to find.

PHOTO: Rep. Smith co-chaired the briefing with the national
organization, Autism Speaks, on April 29. April is National
Autism Awareness Month.

“One of the goals of our Autism Caucus is to disseminate the latest autism news and information regarding advances in autism research, many of which are funded through the National Institutes of Health, or through public-private partnerships. The panel of experts at the briefing provided new information to Members of Congress and their staffs—people we need in our efforts to help families with autism,” said U.S. Rep. Chris Smith (NJ-04), CARE co-founder and co-chair.

Panelists at the April 29 event included representatives from Autism Speaks, Google, Harvard University and the National Institutes of Health. Congressional attendees learned of the current collaboration between Autism Speaks and Toronto’s Hospital for Sick Children, in which researchers are engaged in sequencing—or “decoding” by determining the exact order of base pairs in segments of DNA—10,000 genomes from autistic individuals and their families. In doing so, they hope to identify autism subtypes and their characteristics. This information can then be translated into use for precision medicine, an individualized medical approach that takes into account each patient’s unique genetic, environmental, and lifestyle factors.

“The insight gained through the MSSNG project about autism subtypes and characteristics can lead potentially to more efficient diagnosis and more personalized treatments, improving the quality of care, and quality of life, for people with autism,” Smith said.

Hosted on the Google Cloud platform, the MSSNG project data is available in an unprecedented manner to qualified researchers and medical geneticists worldwide.

“As Co-Chair of CARE, I have seen firsthand how - despite the advances in research – medical advancements remain stymied behind outdated and bureaucratic procedures,” said Smith, who authored three major laws to boost research funding, services and support for families impacted by autism: The Autism Statistics, Surveillance, Research and Epidemiology (ASSURE) Act, P.L. 106-310; The Combating Autism Reauthorization Act (P.L. 112-32), and; The Autism Collaboration, Accountability, Research, Education and Support Act of 2014—(Autism CARES Act/ Public Law 113-157). “Private-public partnerships can greatly compliment ongoing work at NIH and offer a new hope for improving treatments, and gaining a better understanding of the complex causes of conditions and diseases that affect millions of Americans.

“Projects such as MSSNG are laying the foundation for tomorrow’s medical advancements and it is our job as members of congress to provide the legislative environment to facilitate their ability to turn research into real solutions,” said Smith.  

Rep. Smith (R-NJ) and Rep. Mike Doyle (D-PA) co-founded the bipartisan CARE in 2001 in the successful aftermath of the Children’s Health Act, which contained the provisions of legislation Smith introduced that dramatically enhanced federal research on autism.

###