What is SPARK?
Today we simply don’t know enough about autism. SPARK—a landmark autism research project—aims to make important progress possible. SPARK stands for ‘Simons Foundation Powering Autism Research for Knowledge,’ and the mission is simple: we want to speed up research and advance our understanding of autism to help improve lives.
This is why SPARK aims to build a research community of tens of thousands of individuals with autism and their families, who will be asked to share medical and genetic information with scientists and to agree to be contacted about future research studies. The data shared with SPARK researchers will power important new autism research that aims to advance the understanding of autism and provide meaningful information and resources to participants.
By joining SPARK, you will be making invaluable contributions to advancing the understanding of autism.
You can register online here: www.SPARKforAutism.org/uiowa.
Registration takes about 20-30 minutes, and we'd love to have you onboard. As part of your participation in SPARK, we ask that you register and complete a few questionnaires online, and provide a saliva sample using a saliva collection kit that will be shipped directly to your home. You will receive a gift card, valued at up to $50, once you have completed registration for SPARK and mailed back the saliva samples.
Ready to Join SPARK?
Frequently Asked Questions (FAQ)
Who can participate in SPARK?
SPARK is open to individuals of all ages with a professional diagnosis of ASD living in the United States. ASD includes Asperger syndrome, autism/autistic disorder and pervasive developmental disorder-not otherwise specified (PDD-NOS). Participants are welcome to invite biological parents and full biological siblings (with and without ASD) to participate as well.
Can I participate in SPARK if I am or my child is adopted?
Yes – if you or your child has received a professional diagnosis of autism and you meet the additional eligibility requirements, you and/or your adopted child may register to participate in SPARK.
Who can I invite to join SPARK?
If you are an adult with autism, you can invite your adult siblings and biological parents to join SPARK. If you have a child with autism, you can invite that child's biological parent(s) to join, and you may register a sibling without ASD under the age of 18, if applicable.
What if a family member is unable to spit?
If any individual is not able to spit, a cotton swab is included with each saliva kit that allows a caregiver to collect the sample by sponging the inside of the individual's cheek.
Why do you need saliva from my entire family?
The value of this study depends on having DNA from the person with autism and DNA from both of his or her biological parents. Having DNA from the biological siblings also increases the quality of genetic analyses that we are able to perform. We are more likely to discover information about an individual’s autism with the participation of the biological parents and biological siblings.
Will my genetic results be returned to me?
Not everyone in SPARK will have changes in genes that we know to be associated with autism. But if you or your child does, and these are identified in the DNA analysis over the months or years following the study, SPARK may be able to return those genetic results to a physician or certified genetic counselor that you designate. Participants will be advised to schedule an appointment with their designated provider (in-person, by video or by telephone) to learn of and discuss the results
If you do have genetic results returned to you as part of this research study, they will be put into your medical record. Given this, there may be insurance implications you should be aware of. A federal law called the Genetic Information Nondiscrimination Act (GINA) makes it illegal for employers, health insurers and group health plans to discriminate against individuals based on their genetic information.
How will my data be protected?
We work hard to keep your personal information private, but we cannot guarantee total confidentiality. All identifiable information about you/your dependent will be replaced with a study code. To prevent unauthorized access to your personal information, all research data and records will be stored electronically in a secure, encrypted, password-protected database. We will not release information about you or your dependent to others, unless required by law. Our third-party service providers and consultants are legally required to keep all participant information confidential. We will never publish research or media articles on any forum that identifies anyone without that person’s express permission. If you agree to participate in an additional study, the study sponsor may keep your research data and records indefinitely.
What genes are being analyzed as a part of SPARK?
The SPARK gene list can be found here.