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.

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.

You can take part in SPARK if you or your dependent(s):

1. 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).
2. Currently live in the U.S. or are serving in the U.S military abroad.
3. Can read and understand English or Spanish.

All ages are welcome!

At this time individuals who are eligible to register in SPARK include:

1. 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.
2. 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.

Family members who can join SPARK include:

1. Both of the child(ren)’s birth parents.
2. Any additional children with a formal ASD diagnosis. They must be under the age of 18 or your legally dependent adult child.
3. 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.

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?

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.

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.

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.

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.

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.

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/

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.

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 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.

No. There is no cost to join SPARK. You will never be asked to give money as part of this project.

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.

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.

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.

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.

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.

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

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.

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.

Our genes contain the instructions, or code, that tell our cells how to grow, develop and work. “Genetic difference” refers to a change in a gene. These differences can range from being harmful to helpful. Some can have no effect.

Once our lab receives a family’s samples, we look for genetic differences that are definitively linked to autism. If such changes are found and confirmed, the family is contacted about those results. SPARK will return the genetic result either through a SPARK genetic counselor or through the family’s own medical provider.

Since new autism genes are discovered every year, each family’s genes will be re-analyzed every year and rechecked for results.

No. Because SPARK is a research study, our genetic analysis is not like a clinical genetic test or commercial sequencing service. SPARK provides genetic results in the form of a clinical report only if we discover a genetic change associated with autism.

Not everyone in SPARK will have genetic findings linked to autism. Based on what we know today about genes that are linked to autism, SPARK scientists expect to find a genetic difference linked to autism in 5% to 10% of people in the study. This number will increase as we learn more about autism and identify more genes that are linked to autism.

There is also a chance that we will find genes linked to autism in your sample only after we have studied genes from many other families and compared them with yours. In this case, it could be years before there are results to return. Keep in mind that genes are not the only cause of autism, so not all people with autism will have a genetic difference.

SPARK can collect an individual’s genetic information from a small sample of saliva. We’ll mail a saliva collection kit to your home. You can either spit directly into the tube or use the sponges provided in the kit to collect saliva.

We know the process of spitting can be unpleasant or hard for many people with autism. Our hope is that giving saliva will be simpler than giving blood.

We are working on providing alternative methods to collect DNA, and we will contact the relevant participants when these become available.

If you or your child are unable to spit, you can use the sponges that are included with each saliva kit. Caregivers can collect the sample by sponging the inside of the person’s cheek and pressing the sponge against the notch of the funnel so that the saliva will flow into the tube.

These SPARK videos will help you with the saliva collection process.

Once a sample arrives at the lab, it is processed and sequenced.

During sequencing, we look for genetic differences that are definitively linked to autism. If such changes are found and confirmed, the family is contacted regarding those results. It can take many months to study genes and confirm findings. If we find genes linked to autism in your sample, it will be at least one year from the date we get your sample before the results will be ready to share.

See SPARK’s genetic analysis FAQ for more information.

When SPARK has a genetic result to return to a family, the primary account holder is contacted by email. The family can choose if they would like to receive the result through a SPARK genetic counselor or through their own medical provider.

Very rarely. In almost all cases, the genetic results we return will be related to autism. If we do return a result unrelated to autism, we will do so based on current recommendations from the American College of Medical Genetics.

The best research in our field has shown that genetic differences play a big role in autism. There are likely hundreds of genes involved in autism, and while some of these genes are already known, very large studies like SPARK can help find others.

Learning about the genetic causes of autism will help us find potential treatments and preventive measures for things that are common within subtypes of autism, like digestive issues and seizures.

Since everyone has different genes, some treatments may work well for one person while other treatments may work better for someone else. In the future, treatment will likely be tailored based on your or your child’s particular causes of autism.

Different types of genetic changes can contribute to autism. In some cases, genetic changes are passed down (inherited) from parents to their children. In other cases, a random change takes place in the sperm or egg because the process of copying DNA is not perfect. This change to the genetic code is considered a “de novo” (new) change. Studying genes can help us find changes linked to autism no matter when they take place.

Knowing that you or your child has genes linked to autism may be of help:

• When there is an opportunity to take part in research or clinical trials matching your results.
• When you want to connect with other people or families who share the same diagnosis.
• If you or other family members want to know if you or they have a higher likelihood of having a future child with autism.

You can learn more by reading this SPARK article and viewing this webinar.

We are more likely to find clues about a person’s autism when we can also study saliva samples from their biological parents and full biological brothers or sisters. Family members share many genes. Comparing samples from family members makes it easier for us to spot differences in genes.

Under the federal Genetic Information Nondiscrimination Act (GINA), having genes linked to autism should not affect your existing health coverage or whether you qualify for health coverage. To learn more, please visit the GINA website.

Yes. We can tell from saliva samples whether people are related. However, if we find that someone is not the biological parent, we will not share this information with you or anyone else.

You can find copies of your signed consent forms on your study dashboard under “My Documents.”

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.

If you would like to change your consents or assents, please contact us.

Yes. You can participate in SPARK and contribute behavioral data without consenting to submit saliva and share your genetic 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.

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:

Within a few weeks of completing all Round 2 surveys, the primary account holder will be issued a $25 Amazon.com Gift Card code.

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.

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.

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:

Round 2 survey gift codes are issued and emailed within a few weeks of completion of all assigned surveys.

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.

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.

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:

1. Select Accounts & Lists. Amazon displays the Your Account
2. Select Gift cards. Amazon displays the Gift card page.
3. Select Redeem a Gift Card. The Redeem a gift card page opens.
4. In the Enter claim code box, enter the alphanumeric 14-character code that you received in the email from SPARK
5. Click Apply to your balance You will now have the funds available to make any purchase on Amazon.

Amazon has a helpful page, here, with tips for resolving gift card redemption problems.

Saliva samples offer a convenient method for DNA collection as compared with other sources of DNA, such as a cheek swab or blood samples. Saliva collection is a common method for research ranging from large scientific studies to individual personalized medicine tests.

We are more likely to discover information about autism if we can compare an individual’s DNA with the DNA of their biological relatives.

Saliva kits are shipped to each address that you provide during registration. As a reminder, kits can be shipped only within the U.S. Individuals who are stationed overseas in the military should use their current FPO or APO address.

Yes. We will ship saliva kits to multiple addresses you give us at registration.

After you enroll in SPARK, it will take two to three weeks for the kit(s) to be delivered to the address(es) you provided. Please periodically check your SPARK dashboard for any updates during that time. If you notice an error, please double-check that your address is given correctly. If you need to make changes to your address, you can do so by visiting your SPARK dashboard. If you have not received your kit after three weeks, please contact us.

If your saliva collection kit is damaged or items are missing, please contact us.

We only ship saliva kits to addresses within the United States. Individuals who are stationed overseas in the military should use their current FPO or APO address.

Directions in the saliva collection box will take you step by step through the collection process. You and/or your child should not eat or drink for 30 minutes before spitting.

Tips for parents:

• Hold the tube to your child’s mouth, or if your child is able, allow them to hold the tube and ask them to spit into it. If your child holds the tube, don’t let the saliva spill. You must get enough saliva, without air bubbles, to fill the tube to the line that is marked on the tube. This will likely require spitting multiple times.
• If you are having a hard time, we suggest giving yourself or your child a break for a few minutes in between spitting. Then spit or ask your child to spit into the tube again. Feel free to continue taking breaks and having them try again until you have collected enough saliva to get up to the line. During these breaks, it is important to not close the tube, so that the preserving liquid does not release and mix with the saliva just yet.
• We know the saliva collection can be challenging, but we appreciate your patience and continued efforts. For more detailed information on the saliva collection kit instructions—including what to do if you cannot get your child to spit into the tube—please click here.

Completing the saliva collection can be difficult for many people. Here you will find a helpful instructional video to walk you through the saliva collection process. The instructions that came in the box also include a section for if you and/or your child cannot spit. Additionally, if you and/or your child(ren) are unable to collect saliva by spitting or using the sponge – we are working on providing alternative collection methods. These would include blood draws and cheek swabs, and we will contact participants when these become available.

After completing saliva collection, please return your sample in the postage-paid box the kit came in. You can drop it in the mail or hand it to a USPS mail delivery person. The postage-paid return label is already attached to the bottom of the box.

We will keep your saliva sample in a secure laboratory, and if it passes quality control, we will extract DNA from it. Research staff may separate the samples into smaller amounts and freeze them, so they will be available for research for an indefinite period. The samples will be stripped of your personal identifying information and labeled with a unique study identification number.

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.

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.

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.

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.

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.

We will keep your saliva sample in a secure laboratory. If we have received enough DNA, research staff may separate the samples into smaller amounts and freeze them, so they will be available for research for an indefinite period. The samples will be stripped of your personal identifying information and labeled with a unique study identification number.

DNA sequencing decodes the genetic letters that make up an individual’s genome. SPARK only looks at the portion of DNA that codes for proteins, because most genetic differences related to autism are found in this part of an individual’s DNA. The information generated from SPARK’s sequencing analysis cannot be used to determine a person’s identity. All sequencing data is stored securely in the SPARK database. Researchers who request access to SPARK’s genetic data must also agree to store this information securely and may only use it for scientific purposes that they designate in their request.

The genetic information we generate is stored securely in the SPARK database. SPARK and affiliated scientists analyze this information to better understand the genetic components of autism. Sometimes the results of this research will appear in scientific journals. The information that appears in these journals cannot be used to expose an individual’s identity.

SPARK study staff and researchers from around the world depend on it. Outside researchers must go through an approval process before they are allowed to access SPARK’s DNA database.

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.

No. SPARK does not and will never sell data or DNA to anyone.

All information shared with SPARK is kept securely in its database. Only if you request and receive a genetic result from SPARK this information go into your medical record if  you choose to have the result returned to you by your medical provider or if you tell your medical provider.

The federal 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. However, if you do receive a genetic result through SPARK, the physician you designated will put this information into your medical record, and there may be insurance implications.

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.

We verify identity by requiring that each person who registers has a unique email address.

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.