FAQ

FAQ

ABOUT SPARK

What is the purpose of SPARK? SPARK aims to help scientists find and better understand the potential causes of autism. As part of this effort, we study DNA from people with autism and from their family members who may or may not have autism. We also study information about their health and things that can impact health like behavior and lifestyle. To succeed, SPARK needs many thousands of people with autism and their families to join. What we collect and learn will be shared with many autism researchers to help speed up the progress of autism research. 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 will be able to learn 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? Have a 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. You can take part in SPARK if you or your dependent(s): 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? 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. Family members who can join SPARK include: Can I take part in SPARK if I am or my child is adopted? Yes.

For more, 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. You can read more about SPARK’s research match program here Can I or my child 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 will be shared with the entire autism research community (doctors, experts and researchers) so that they can study and learn from it. We are also publishing findings in scientific journals and returning information to our participants via study reports. Who pays for SPARK? SPARK is sponsored by 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? REGISTRATION 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 25 clinical sites across the country. Click here to see if there’s a site near you! After I join, what’s next? After you register, the website will take you to your study dashboard. 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 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. SPARK clinical sites are a network of 25 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. Click here to learn more and to see if there’s a SPARK clinical site near 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. 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 “Login” on the SPARKforAutism.org home page. On the login page, click on “Reset Password.” 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. What if I or my child can’t spit? 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. You can find video resources that will further explain the saliva collection process here

SURVEYS AND RESEARCH OPPORTUNITIES

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 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. Any services received. 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 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

What is a “genetic difference”? What type of genetic differences will SPARK uncover? 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. Will everybody in SPARK receive genetic 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. How will SPARK get a sample of my genes? 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. I sent in my saliva sample. What happens now? Once a sample arrives at the lab, it goes through processing. During this stage, the lab makes sure the sample can be used. For example, they check to see if there is enough DNA in the saliva for it to be usable.

After processing, the sample is stored until we send it out for sequencing. We do not sequence samples as they come in. Instead, for logistical reasons, we wait until we have large batches of samples ready. Storage does not affect the integrity of the DNA.

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. If I have a genetic result, how will it be returned to me? 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.

For more, see “Can having genes linked to autism affect my health insurance coverage?” Will SPARK tell me about genetic differences not related to autism? 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. How will studying genes help people with autism? 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. There is no history of autism in our family, so where did my or my child’s autism come from? 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. Will it help to know that I or my child has genes linked to autism? 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. Knowing that you or your child has genes linked to autism may be of help: Why do you need saliva from multiple family members? 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. If a genetic cause is found, will my health insurance coverage be affected? 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 here When studying genes, can you tell if someone is the child’s biological father or mother? 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.

CONSENTS

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 if I want to change my consents or assents? If you would like to change your consents or assents, please contact us at info@SPARKforAutism.org. 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. 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

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.

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.

Survey Rounds:

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

Other Study Opportunities:

If you sign up for more research studies in the future, such as through our research matching program, 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.

Survey Rounds:

Round 2 survey gift codes are issued and emailed within a few weeks of completion of all assigned surveys. 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 email info@SPARKforAutism.org 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 info@SPARKforAutism.org. 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 by clicking on “Accounts and Lists” then “Your Account” near the upper right corner of the page. You will then be directed to a new page where you will click on “Gift Cards”. A new page will open where you can redeem a gift card. After you click on “Redeem a Gift Card”, you will be directed to a new page. On this page you will 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

Why is SPARK using saliva to collect DNA? 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. Why do you need saliva from anyone beyond the child or adult with ASD? We are more likely to discover information about autism if we can compare an individual’s DNA with the DNA of their biological relatives. How are the saliva kits shipped? 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. Can I give multiple shipping addresses for different registrants? Yes. We will ship saliva kits to multiple addresses you give us at registration. My saliva collection kit hasn’t arrived. Where is it? 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 info@SPARKforAutism.org. My saliva kit package has missing or damaged items. What should I do? If your saliva collection kit is damaged or items are missing, please contact info@SPARKforAutism.org. What countries do you ship to? 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. I received my saliva kit in the mail. How do I use the kit and provide the saliva sample(s)? 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. I’m still having trouble completing my or my child’s saliva collection kit. What should I do? 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. How do I ship my kit back to you? Where do I send my sample? 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. What happens to my sample after I send it back? 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 of time. The samples will be stripped of your personal identifying information and labeled with a unique study identification number.

PRIVACY