SPARK Research Match
What is SPARK Research Match?
You participate in SPARK research by submitting your saliva sample and completing tasks on your SPARK dashboard. In addition, SPARK provides you with the opportunity to participate in studies led by researchers throughout the U.S. and elsewhere. A wide variety of research projects use Research Match to find potential participants who are willing to volunteer for their studies.
Research Match helps researchers find the participants they need to successfully complete their studies. Participants get the chance to be represented in research and hear about studies that are appropriate for them. And, we can all learn more about autism.
What has SPARK Research Match accomplished so far?
From its launch in July 2017 through July 2020:
- More than 77,000 families have been invited into 61 studies. Another 31 studies are in progress.
- More than 32,000 families have responded to study invitations.
- Researchers have published five articles and shared one draft publication.
How does SPARK Research Match work?
Once SPARK approves of and prepares a study, we look through our data to find the SPARK participants that qualify for the study. Each study has different qualifications. For example, one study may need girls between the ages of 3 and 5. Another study, which takes place at a clinic, may require that participants live within 50 miles of that clinic.
We send qualified participants an email that describes the study and how to get started.
Then it’s up to the selected SPARK research participants to decide whether a study is right for them. They can opt into the study. They can also let SPARK know that they are not interested so that they won’t get any additional emails about the study.
If the participant wants to learn more about the study, SPARK informs the study team. SPARK does not share any information with researchers until participants approve of the exchange of information.
If you decide to not join one study, you can still join other studies.
What do I have to do to be invited to a SPARK Research Match study?
SPARK sends Research Match invitations to SPARK research participants only, so you must have consented to be in the SPARK study.
Some Research Match studies require more information than just the information you provided when you registered. So, be sure to complete any tasks on your SPARK dashboard and send in your saliva kit(s) if you haven’t already.
What types of studies participate in SPARK Research Match?
These studies may involve anything from an online survey about autism services to a study in a clinic about autism and anxiety. For example, SPARK has helped researchers learn about gender identity, genetics, and depression.
Studies may take place online, over the phone, or in person.
What happens when a study starts?
When a study starts, you will work with the team at the study itself and not with SPARK staff. You will be given information about who is doing the research, and who to contact if you have any questions or concerns. The study’s team will provide any incentives or reimbursements.
Will my family receive an incentive?
If you participate in a Research Match study, you will be told in advance what incentive, if any, to expect and when to expect it. The Research Match study will provide the incentive—not SPARK.
The incentive that you get from a Research Match study depends on that study’s budget. The budget for a research study, including incentives, is determined before a study begins by the institution that funds the study, for example, the National Institutes of Health. Incentives are also controlled by the human subject ethics board at the institution that is doing the study. Some studies cover travel costs and other expenses.
Will my family learn about the results of the study?
You may receive information about the study from the study team itself. In addition, SPARK may prepare a Research Match Report or an article about the study. Read about some current and past SPARK Research Match studies.
How does SPARK select studies?
Researchers who want to recruit SPARK research participants apply through SFARI Base. SFARI Base is a clearinghouse for autism-related research resources and an online portal for the submission of research recruitment requests.
Once the request is processed, the SPARK team works with the Participant Access Committee and a scientific committee to ensure that the study is appropriate for SPARK research participants, has scientific merit, and enhances the autism research agenda.
To help ensure that the study is ethical, it must be approved by the institution’s ethics board that governs research involving human subjects. In addition, most studies are reviewed by funders and other scientists before they receive funds to proceed.
Research Match Summary Reports
- Camouflaging Autism: Do Autistic Teenagers Hide Their Autism Traits? (PDF format)
- Impact of COVID-19 on Families and Children with Autism (PDF format)
- Impact of COVID-19 on Autistic Adults (PDF format)
- Treatment Patterns in Children with Autism in the United States (PDF format)
- Genes and Environment Autism Research Study (GEARS) (PDF format)