SPARK Northern New England Comes To Maine!
Maine Medical Center, with Dr. Matthew Siegel as Primary Investigator, was recently chosen as one of the 25 clinical site partners for SPARK (Simons Foundation Powering Autism Research for Knowledge), a national scientific study and community of individuals with autism and their families. SPARK Northern New England will cover Maine, and our neighbors in New Hampshire and Vermont.
SPARK is a free online study with a simple mission: to speed up research and advance the understanding of autism. By building a community of 50,000 research participants, made up of individuals with autism and their parents and siblings, SPARK aims to make new research possible that was not in the past and to provide participants with access to new tools and information.
Autism has a strong genetic component. To date, approximately 50 genes have been identified that almost certainly play a role in autism, and researchers estimate that many more are involved. But, to identify these genes, many more genetic samples (DNA from saliva) from individuals with autism and their immediate families are needed. That is where SPARK comes in. The collection of genetic information (DNA) will be analyzed to improve our understanding about the role genes play in the development of autism. The Simons Foundation is building a genetic database that researchers can use to learn more about autism. The study may potentially help identify subgroups of individuals with autism to develop more targeted treatments.
Any individual with a professional diagnosis of autism and their family is invited to participate in this study. Participation can be done entirely on line and through the mail. Each individual with autism and their biological parents will be asked to complete a brief on-line questionnaire and provide a saliva sample collected with a kit they receive in the mail. The kit includes a tube for collecting saliva, as well as an absorbent swab that can be used for any person who is not able to spit into the tube. It is especially important that we collect DNA not just from the individual but also both biological parents (this creates a “trio”). Trios allow scientists to identify whether an autism gene was passed down from a parent or “sprung up” in a different way. However, all individuals with a diagnosis of autism, even without family participation, are invited to enroll in SPARK to help us build a robust research community!
The Research Coordinator can help you through the process, answer any questions, and if you prefer can schedule an in-person visit to collect the saliva sample.
Why participate in SPARK Northern New England?
By joining SPARK you are helping to accelerate research to find causes and treatments for autism and receive benefits yourself as well. The on-line portal provides the latest updates on research, and access to experts who will provide information to manage daily situations. You will also have access to webinars such as, Career Paths of People with Autism and Their Parents, Challenging Behaviors in Autism-Self-Injury and Personal Space and Autism. This library will continue to expand.
Participating families can receive a gift card of up to $50.00 once registration is completed and saliva samples are mailed in. You may receive results from the analysis of your or your family’s DNA if you opt to receive your results, and a genetic cause for autism or another relevant genetic issue is identified. In this situation, access to genetic counseling will also be facilitated.
The Maine Autism Community has a unique opportunity to help speed up Autism Research by joining SPARK Northern New England today.
You can download our brochure and registration process PDFs below:
If you have any questions, or want to learn more, please contact Laurie.
Laurie A. Raymond, LCSW
SPARK Northern New England (NNE)
Maine Medical Center
Phone: (207) 661-7620
SPARK EMAIL: firstname.lastname@example.org
SPARK Northern New England Site: https://sparkforautism.org/mainemedicalcenter