Date Revised: September 1, 2022
SPARK is an autism research study and a growing community of autistic individuals, their families, and researchers on a mission to advance the understanding of autism. SPARK’s mission is to improve the lives of people with autism by identifying the causes of autism and informing more effective therapies, treatments, services, and supports. Because without research, we are just guessing.
To understand the complexity of autism ─ what makes us the same and what makes us different ─ we need large numbers of people to participate. SPARK is open to all individuals living in the U.S. with a professional diagnosis of autism and their family members.
SPARK has over 100,000 people with autism and 175,000 of their family members participating. Autistic adults and their families are not only participants in the study, but are also serving on three advisory boards, on our staff, and as community partners. In addition, SPARK is committed to diversity, equity, and inclusion in research and strives to listen to and include all voices in the autism community.
When you join, SPARK asks you important information about yourself and participating family members. You can also choose to share your genetic information (DNA) from saliva samples, though you do not have to do this to participate in the study. Over time, you can do as much or as little as you want — all from a mobile phone, a desktop computer, or anything in between.
Over 100 genes have been linked to autism. We hope that by understanding the genetic basis of autism, we will better understand what makes autistic individuals special and how to best support them.
SPARK is making important progress possible. We are committed to supporting autism research for decades to come. There are exciting things on the horizon.
Learn more about what SPARK participation involves.
Download the 5-Year Progress Report (PDF format) to learn what the community has accomplished since SPARK’s launch in 2016.
WHY YOU CAN TRUST SPARK: OUR STORY
SPARK, the world’s largest autism research study, is part of the Simons Foundation Autism Research Initiative, or “SFARI.”
Marilyn and Jim Simons founded the Simons Foundation over 26 years ago to advance basic science — science that uncovers how the world works. The Simons family provides all funding for the foundation, so the foundation — and SPARK — do not need to fundraise. Learn more…
As autism is a spectrum, researchers need many people with autism to participate in all types of research. Until now, only a small number of individuals and families affected by autism have ever participated in research. SPARK wants to invite the entire autism community to dramatically expand its participation.
SPARK will provide researchers with medical and genetic information from tens of thousands of individuals and families affected by autism. These data will power important new research that aims to advance the understanding of autism and provide meaningful information and resources to participants.
Interested in joining SPARK? Here’s what you should know.
MEET OUR CLINICAL SITE PARTNERS
More than 30 of the nation’s leading medical schools and autism research centers have joined SPARK to help recruit individuals and families affected by autism. These institutions are located in all regions of the United States and have been leaders in advancing the science of autism.
Working with their existing patient populations and through community outreach, the clinical sites will play a key role in SPARK recruitment.
ABOUT OUR COMMUNITY ADVISORY COUNCIL
MEET OUR DIVERSITY, EQUITY, AND INCLUSION ADVISORY BOARD
The Diversity, Equity, and Inclusion (DEI) Advisory Board guides SPARK’s efforts to increase representation of communities of color in autism research. It is a diverse group of scientists, clinicians, and community leaders who provide guidance on strategies to build partnerships, increase awareness, and promote participation in research among underrepresented racial and ethnic communities. Learn more…
ABOUT OUR PARTICIPANT ACCESS COMMITTEE
SPARK’s Participant Access Committee (PAC) reviews all applications submitted for SPARK Research Match to make sure that the studies that apply for Research Match and are approved have the potential to contribute to the understanding of autism. The committee also makes sure that the studies are sensitive to the needs of the community. The committee members work to ensure that the studies align with SPARK’s mission, that they do not overburden the participants, and that any incentives given to the participants, such as gift cards, take into account the amount of time that participants will spend and the study’s budget. Learn more…
MEET OUR COMMUNITY PARTNERS
SPARK has partnered with national and local autism community organizations across the U.S. to help find research participants and spread the word about this landmark study.
Most of these organizations traditionally have focused on providing services, advocacy, resources and networking opportunities, rather than the science of autism. With SPARK, more members of the autism community can now learn and be a part of autism research. Learn more…
MEET OUR PARTICIPANTS
People from all over the country are joining SPARK, and they want to share their stories. From anecdotes about registering for SPARK to accounts of how families dealt with diagnoses, SPARK community members are sharing their experiences with one another.