FAQ
Scroll down to get answers to the questions about the SPARK autism research program. You can filter the questions by clicking on one of the tags/topics. See the SPARK’s Genetics Program page for comprehensive information about saliva collection, autism genes, learning about your results, and more. Also, if you have a question, you can contact us.
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About SPARK
12 Questions
What is the purpose of SPARK?
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.
Why should I take part in SPARK?
By participating in SPARK, you will help shape the future of autism research. Your DNA could spark the next genetic discovery. With DNA from thousands of families across the country, we are learning more about genes that may be related to autism and discover new ones. In return, you will be able to get updates on the latest research, join other autism research studies, find possible genetic causes of autism in your own family, and power future autism research for years to come.
Who can take part in SPARK?
You can take part in SPARK if you or your dependent(s):
- Have a professional diagnosis of autism spectrum disorder (ASD). This can include Asperger syndrome, autism/autistic disorder, and pervasive developmental disorder–not otherwise specified (PDD-NOS).
- Currently live in the U.S. or are serving in the U.S military abroad.
- Can read and understand English or Spanish.
All ages are welcome!
At this time individuals who are eligible to register in SPARK include:
- The legal guardian of a dependent or dependents with a professional diagnosis of ASD. Guardians can register on behalf of themselves and their dependent(s). In relevant circumstances, legal guardians can invite biological parents of their dependent(s) to join if they are able/choose to.
- An independent adult with a professional diagnosis. Adults can register for themselves and can invite biological parents and full adult siblings to join as well. They can also register their own dependent(s), if applicable, during their registration. Please note: If you have an eligible diagnosis (see above), you can take part in SPARK even if your siblings or parents do not.
If my child has autism, who else in the family can take part in SPARK?
Family members who can join SPARK include:
- Both of the child(ren)’s birth parents.
- Any additional children with a formal ASD diagnosis. They must be under the age of 18 or your legally dependent adult child.
- One full biological sibling of the child with autism who does not have an ASD diagnosis can be added. However, parents who have more than one child with ASD may add all siblings without autism.
Can I take part in SPARK if I am or my child is adopted?
Yes. For more information, see “Who can take part in SPARK?” and “If my child has autism, who else in the family can take part in SPARK?
Can I enroll in SPARK if I have participated in research or shared my DNA sample in other studies?
Yes. Families who have already completed clinical genetic testing are encouraged to participate in SPARK and complete our saliva collection process if they are otherwise eligible for our study. Participating in SPARK allows their de-identified information to become available to top researchers who are moving autism research forward and helping to find answers for the community at large. Participating also means that the family will have the opportunity to take part in additional research opportunities if they are interested. Such opportunities may become available through SPARK’s research match program.
Can my child or I take part in SPARK if earlier genetic testing for autism found nothing?
Yes. New genes and genetic changes related to autism are found on a regular basis, and one of SPARK’s goals is to discover more of these.
Can I stop taking part in SPARK?
Yes. You can stop taking part in SPARK at any time. Your family’s privacy is a top priority of our study, and participation in SPARK is completely voluntary. You need only send an email to info@SPARKforAutism.org if you would like to withdraw.
Why does SPARK need to study so many people?
The more people who enroll in SPARK, the more genes and genetic changes related to autism we are likely to discover. When we compare the DNA of thousands of people, we can find differences between individuals. Sometimes these differences are related to autism, and other times they are not. SPARK aims to enroll 50,000 families affected by autism in order to move autism research forward more quickly.
Will SPARK share its findings?
Yes. SPARK data is being shared with qualified researchers and clinicians so that they can study and learn from it. We are also publishing findings in scientific journals and returning information to our participants via Research Match study reports. We also provide participants with personalized reports after they complete some of our surveys.
Who pays for SPARK?
The SPARK study is supported by the Simons Foundation, through the Simons Foundation Autism Research Initiative (SFARI). SFARI’s mission is to improve the understanding, diagnosis and treatment of autism spectrum disorder (ASD) by funding cutting-edge research of the highest quality and significance. For more information on SFARI, please visit https://sfari.org/
What are clinical sites?
SPARK clinical sites are a network of 30 autism research centers at universities and hospitals throughout the country that have partnered with SPARK. These sites help educate their local communities about SPARK, enroll new participants, and run autism research studies of their own. Find out if there is a clinical site near you.
Registration
7 Questions
How do I join SPARK?
Enrollment can be done entirely online at www.SPARKforAutism.org. It will involve several steps. Each independent adult participant must have their own email address. You can start and stop the registration process at any time, and your information will be saved along the way. You also have the option of completing your registration at one of our clinical sites across the country.
After I join, what’s next?
After you register, the website will take you to your SPARK study dashboard–a personalized web page where SPARK displays important information about the study including research opportunities and personal reports. There you can check on the status of your saliva kit and gift card, if applicable. You will also be asked to complete several surveys. You will receive information back from some of the surveys.
If you consented to provide a saliva sample or samples for DNA analysis during the registration process, you will receive your kit(s) in the mail about two to three weeks after you registered. Once you send your saliva back, we will analyze it to search for genetic changes related to autism. If we find a genetic change related to autism in your sample, we will contact you.
Also, when you enrolled in SPARK, we asked if we could contact you about other autism research that may be relevant to you or your family through SPARK research match. If you agreed, you may be invited to join these other studies via email. Participation in these studies is completely voluntary.
Does it cost money to participate?
No. There is no cost to join SPARK. You will never be asked to give money as part of this project.
What is the time commitment for registering online and providing a DNA sample?
Enrollment usually takes between 15 and 30 minutes. You can start and stop the process at any time, and your information will be saved along the way. For the saliva sample collection, producing enough saliva can take anywhere from 15 minutes to an hour.
I forgot my login information. What do I do now?
Your username is the email address you used when you registered with SPARK. If you have forgotten your password, you can reset it by clicking here or selecting “Log in” on the SPARKforAutism.org home page. On the log in page, click the “Reset Password” button.
How do I invite other people?
During registration, you may be prompted to invite biological relatives like parents or siblings via email. You can also invite other family members to participate after you’ve registered by using the invitation tool on your dashboard. We will let you know when other invitation features become available.
Please note: We know that each family in our community is different from the next, and we do not expect anyone to invite family members or relatives that they know are either unable to or uninterested in participating.
I invited someone to participate in SPARK and that person hasn’t joined. What do I do?
If you invited someone to participate in SPARK and they haven’t joined yet, please double-check to make sure you used the correct email address during the invitation process and ask them to check that the invitation did not go into a spam folder. If there is a problem, you can resend an invitation from your study dashboard.
The SPARK study team will send up to three reminder messages to individuals who were invited to join SPARK by another participant. After that, the SPARK study team will make no further attempts to reach that individual.
Surveys and Research Opportunities
4 Questions
What is the purpose of the surveys that appear on a participant’s study dashboard?
We use surveys to collect medical and behavioral information. The number and types of surveys that you receive on your SPARK study dashboard will vary from person to person.
What surveys will I need to complete?
The number and types of surveys you will be asked to complete depend on a number of factors, such as whether or not the individual has an ASD diagnosis and the individual’s age. None of the surveys on your study dashboard are required, but we’re grateful when you complete them. They will help us learn much more. Only the primary account holders and/or invited family members with an ASD diagnosis will receive surveys. For example, if you invite your child’s biological parent to join, they will not be asked to complete any surveys on themselves or their dependents unless they have an ASD diagnosis.
The surveys help us collect information about:
- Other medical conditions
- Behavior
- Social and physical development
- Services
- Family medical history
Will SPARK tell me about the results from the surveys that I fill out?
Generally, yes. While the results do not represent a clinical evaluation, it is our hope that participants find value in survey results. For example, if a family’s survey results show that an individual has a lot of concerns about a family member, the individual could talk to their doctor, school district, etc., and perhaps even use the results as a starting place for that conversation.
What other types of studies will I have access to? What is “research match”?
By joining SPARK, you will have the chance to learn about and participate in other studies led by autism researchers from around the world. We call this program SPARK research match. For these studies, you will only be contacted if you or your family meet the enrollment criteria. You do not have to take part in any of these studies. It is your choice. If you decide not to join one study, it will not prevent you from joining others. Studies may take place online, over the phone, or in person. They range in topics from genetics to behavior interventions.
Genetics
1 Question
How can I learn about saliva collection, DNA analysis, and other aspects of SPARK's genetics program?
See the SPARK’s Genetics Program page for comprehensive information about saliva collection, autism genes, learning about your results, privacy, and more.
Consenting for the SPARK study
5 Questions
Where can I get a copy of my signed consent forms?
You can find copies of your signed consent forms on your study dashboard under “My Documents.”
What is “assent”?
Assent is a child’s or dependent’s agreement that he or she is willing to participate in research. Assent is used with people who are dependent or are too young to give informed consent. Assent is needed if they are able to understand the research, its expected risks and possible benefits, and the activities expected of them as subjects. To receive assent from your child or dependent, you must explain this information and ask if he or she agrees. If the child gives assent, informed consent must also be obtained from the person’s parent or guardian. To participate in SPARK, children ages 10 through 17 and dependent adults are asked to assent, if they are capable.
What if I want to change my consents or assents?
If you would like to change your consents or assents, please contact us.
Can I still participate in SPARK if I don’t consent to sharing genetic data?
Yes. You can participate in SPARK and contribute behavioral data without consenting to submit saliva and share your genetic data with researchers.
Can I receive genetic results if I don’t consent to share my data with researchers?
No. If you do not consent to share your genetic data, we will not send a saliva collection kit to you. Therefore, we will not have a saliva sample to analyze in order to send you results.
Gift Cards
7 Questions
What activities in SPARK can earn an Amazon.com Gift Card code?
SPARK is very thankful for our active community of participants! To express our gratitude, we issue Amazon.com Gift Card codes to participants who complete certain tasks.
Your Amazon.com Gift Card code will be sent to you in the form of an alphanumeric code to use toward purchases on Amazon.com and will no longer appear on your dashboard. You will receive this code via email.
Gift card codes for saliva donation:
Within a few weeks of receiving adequate saliva samples from a family, the primary account holder will be issued up to $50 in Amazon.com Gift Card codes. The $50 is issued per family (including invited participants), rather than per participant. $50 is the maximum amount of gift codes a participating family is eligible to receive in recognition of saliva sample donation.
Gift card codes for surveys:
You will receive a gift code within a few weeks of completing a survey that is associated with a gift code. The SPARK Dashboard article provides information about the surveys and which ones are associated with gift codes.
For SPARK Research Match opportunities:
If you sign up for outside research studies in the future through SPARK Research Match, there may be additional compensation.
Who receives the Amazon.com Gift Card code?
Amazon.com Gift Card codes for participation in SPARK are provided per family rather than per individual enrolled. They are emailed to the primary account holder.
When will I receive my Amazon.com Gift Card code?
Your Amazon.com Gift Card code will arrive via email within a few weeks of your completing certain activities. We appreciate your patience!
Saliva Donation:
It may take several weeks for us to receive your kits and confirm that the samples can be analyzed. Your gift code will be issued within a few weeks of confirming receipt of an adequate saliva sample or samples. You can track the progress of your sample(s) on your dashboard.
Surveys:
Gift codes for some surveys are issued and emailed within a few weeks of completion.
It has been a few weeks, and my Amazon.com Gift Card code still has not arrived. What do I do?
Please first check your SPARK dashboard for any updates on the status of your Amazon.com Gift Card code. Please contact us if you have additional questions.
I sent in my family’s saliva and received a $25 Amazon.com Gift Card code. Why didn’t I receive a $50 Amazon.com Gift Card code?
If you received a $25 Amazon.com Gift Card code instead of a $50 code for your saliva sample(s), it is because someone you invited to participate did not return a complete saliva sample. If you have further questions about this, please review the data consent form found in the “My Documents” section of your dashboard or contact us if you have additional questions.
How do I redeem the Amazon.com Gift Card code?
To redeem the Amazon.com Gift Card Code you must first have an Amazon account. If you do not have an account with Amazon, you can set one up here. Once you are logged in to Amazon, you can redeem your code as follows:
- Select Accounts & Lists. Amazon displays the Your Account
- Select Gift cards. Amazon displays the Gift card page.
- Select Redeem a Gift Card. The Redeem a gift card page opens.
- In the Enter claim code box, enter the alphanumeric 14-character code that you received in the email from SPARK
- Click Apply to your balance You will now have the funds available to make any purchase on Amazon.
I am having trouble with my Amazon.com Gift Card code. What do I do?
Amazon has a helpful page, here, with tips for resolving gift card redemption problems.
Saliva Kits
1 Question
How can I learn about collecting saliva for DNA analysis?
See the SPARK’s Genetics Program page for comprehensive information about saliva collection, autism genes, learning about your results, privacy, and more.
Privacy
11 Questions
How is SPARK protecting my data?
Here are some of the ways we keep your personal information private:
- All research data that could identify you or your child is replaced with a study code called a global unique identifier (GUID). GUIDs allow researchers to share data about you without sharing anything that could identify you.
- All your research data and records are stored electronically in a secure, encrypted, password-protected database.
- We will not release research data about you or your child to others, unless required by law.
- We will never publish anything about the study on any forum that could identify you without your express permission.
- Our third-party service providers and consultants are legally required to keep all your research data private. While we cannot guarantee total privacy, we make every effort to maintain your privacy.
Who has access to the data that SPARK collects?
Your research data will never be shared with third parties without your consent. SPARK maintains a large data resource for qualified scientists around the world. Before researchers can use this data, their applications must be reviewed and approved.
Before any of your research data from SPARK is shared for other autism research, all information that could identify you is replaced with a global unique identifier (GUID). GUIDs allow researchers to share research data about you without exposing anything that could identify you.
If I stop taking part in SPARK, what happens to my data?
On the date you withdraw from SPARK, we will stop asking for your research data and sharing it with other studies. Any data that has already been shared with or used by other studies cannot be taken back.
If you would like to withdraw from SPARK, please send an email to info@SPARKforAutism.org.
What kind of data does SPARK collect?
SPARK collects two main types of data:
- Information that participants share through surveys
- DNA data that comes from participants’ saliva samples
Both types of information are stored securely and are encrypted, for an extra layer of protection.
Is identifying information like names, phone numbers or email addresses shared with anyone outside the research study?
No. Identifying information is only shared with researchers who are using SPARK data for research. You are in control of the information you share. We will not share your data without your permission. If you choose to participate in a Research Match study, we will share your contact information with researchers so that they can contact you.
How does SPARK protect my genetic information?
See the SPARK’s Genetics Program page for comprehensive information about saliva collection, autism genes, learning about your results, privacy, and more.
Can my data ever be used to identify me or my family members?
It is possible that the vendors we work with (for example, a company that hosts a SPARK survey) could identify participants from their data. However, all of our vendors sign privacy agreements and are required by law to abide by these agreements.
Your contact information will not be shared with researchers through SPARK’s research match program unless you give us permission.
Will the data I share go into my medical record?
All information shared with SPARK is kept securely in its database. Only if you request to receive a genetic result from SPARK through your medical provider or if you tell your medical provider about the things you learn from SPARK will this this information go into your medical record.
What information that I share with SPARK will my family members be able to see?
No other family members can see information that you enter as a SPARK participant. All participants over the age of 18 are required to have their own accounts.
How do you verify participants’ identity?
We verify identity by requiring that each person who registers has a unique email address.
Would police or the FBI ever be able to access DNA or other information collected?
Generally, no. To protect your privacy, we have obtained a Certificate of Confidentiality from the National Institutes of Mental Health. Researchers can use this certificate to legally refuse to disclose information that may identify you in any federal, state or local civil, criminal, administrative, legislative or other proceedings—for example, if there is a court subpoena.
Researchers will use the certificate to resist any demands for information that would identify you, except as explained below:
- The certificate cannot be used to resist a demand for information from personnel of the United States federal or state government agency sponsoring the project and that will be used for auditing or program evaluation of agency-funded projects or for information that must be disclosed in order to meet the requirements of the federal Food and Drug Administration.
- The certificate does not prevent you or a member of your family from voluntarily releasing information about your child, yourself or your involvement in this research.
- If an insurer or employer learns about you and/or your child’s participation and obtains your consent to receive research information, then the investigator may not use the Certificate of Confidentiality to withhold this information.