SPARK Research Match Participant Access Committee

photo of a woman in an online meeting

SPARK Research Match Participant Access Committee

Date Published: August 2, 2022

SPARK is committed to research that is meaningful to those affected by autism. Because of this commitment, SPARK engages the community in many different ways, including SPARK Research Match and the Participant Access Committee. 

SPARK Research Match provides SPARK participants with the opportunity to take part in a wide variety of studies throughout the U.S. and internationally. They have the chance to be represented in research and hear about studies that are appropriate and meaningful.

SPARK Research Match has invited more than 100,000 families into 170 research studies. The studies’ topics vary from movement problems in older autistic adults to special interests. SPARK Research Match has been instrumental in helping these studies have enough participants to learn about many important aspects of the autism journey. Learn more about SPARK Research Match.

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. 

The PAC is made up of both community and scientific advisors.

Community Advisors

Up to six members of the autism community, including autistic adults and parents of children with autism, serve on the PAC. They meet four times a year to review and discuss Research Match applications. Discussions focus on the importance of the research topic to the community, the burden of participation, compensation, and any sensitive issues or concerns about the research. Members serve for up to 18 months.

“We look at whether a study would be of interest to participants, if it’s a sensitive topic, the requirements of the study, potential compensation. It’s cool to see all the ways people are approaching the subject.”

Karah Manning, Former PAC community advisor

Scientific Advisors

In addition to community advisors, the PAC has five advisors who meet four times a year. The scientific advisors use their expertise to review all applications in the following areas:

  • Contribution. Will the research contribute to what is known about autism? Is the research designed in a way that it can answer the research questions? 
  • Engagement of SPARK participants. Did the community have the opportunity to provide input into different aspects of the study such as study design and incentives? Is this topic a priority for or likely to make an impact in the autism community?
  • Feasibility. Will the study, as designed, be able to attract enough participants? Can the study be completed within the time and budget allotted?  Will the participants be able to complete the tasks that they are asked to complete?
  • Alignment with SPARK’s mission. Will the study help improve the lives of people with autism by identifying the causes of autism and informing more effective therapies, treatments, services, and supports?