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ABOUT SPARK
What is the purpose of SPARK?

SPARK is a landmark online research partnership designed to facilitate research that advances our understanding of the causes of autism and how autism impacts all those affected. SPARK will be successful only by collecting a significant amount of data provided by the autism community. SPARK researchers are depending on tens of thousands of families and individuals with autism to join this community and provide the data that will help power research aimed at isolating specific genes and/or causes of autism, and translating those findings into real improvements.

Why should I participate in SPARK?

Join SPARK today, at no cost to you or your family, to help transform our understanding of autism and help improve the lives of individuals affected by autism and their families.

  • Joining SPARK will provide participants with access to experts through webinars and other online channels so they can hear about the latest research in autism.
  • SPARK will provide support to participants by presenting tips and information about autism and how to approach potential challenges in new and helpful ways. Knowledge gleaned from scientific advances can be incredibly powerful. For some, this could mean learning the cause of your or your child’s autism.
  • Joining SPARK will also give you access to the latest research updates that will arm you with information that could help address daily challenges.
  • In appreciation of your participation in SPARK, SFARI will provide the individual with autism with a $50 Amazon.com Gift Card Code once you or your family has returned the saliva samples and completed some medical and family history information about yourself and/or your affected child(ren). You will never be asked for fundraising donations. Gift cards for participation in SPARK are provided per family rather than per the number of individuals with ASD enrolled. Therefore, the maximum amount of gift cards a participating family is eligible to receive is $50.

To help uncover more about the genetic underpinnings of autism, SPARK researchers will look to identify changes in genes that are determined to be the primary genetic cause of autism in a subset of participants. In these cases, SPARK may be able to return those genetic results to a physician or certified genetic counselor that a participant designates, if the participant or parent/guardian agrees to learn the genetic cause of their autism. It is not guaranteed that all participants will have a change in genes known to be associated with autism, but this is one aspect of SPARK that may motivate some individuals to participate. 

SPARK is open to individuals of all ages with a professional diagnosis of ASD living in the United States. ASD includes Asperger syndrome, autism/autistic disorder and pervasive developmental disorder-not otherwise specified (PDD-NOS). Participants are welcome to invite biological parents and full biological siblings (with and without ASD) to participate as well.

Who can participate in SPARK?

SPARK is open to individuals of all ages with a professional diagnosis of ASD living in the United States. ASD includes Asperger syndrome, autism/autistic disorder and pervasive developmental disorder-not otherwise specified (PDD-NOS). Participants are welcome to invite biological parents and full biological siblings (with and without ASD) to participate as well.

Can I participate in SPARK if I am or my child is adopted?

Yes – if you or your child has received a professional diagnosis of autism and you meet the additional eligibility requirements, you and/or your adopted child may register to participate in SPARK.

If I have participated in research or shared my DNA sample before, can I still participate in SPARK?

If you have received a professional diagnosis of autism and meet the additional eligibility requirements, you may register to participate in SPARK. Depending on the type of research you have participated in previously, or the type of analyses that have been done on a previous DNA sample, we may not analyze the DNA that you provide through the SPARK saliva kit.

Yes. Not everyone in SPARK will have changes in genes that we know to be associated with autism. If you or your child has received a professional diagnosis of autism and you meet the additional eligibility requirements, you can join SPARK. Additionally, new autism risk genes are being discovered constantly, so updated genetic analyses may reveal changes of importance that were not appreciated earlier.

Who can I invite to join SPARK?

If you are an adult with autism, you can invite your adult siblings and biological parents to join SPARK. If you have a child with autism, you can invite that child's biological parent(s) to join, and you may register a sibling without ASD under the age of 18, if applicable.

Your participation in SPARK is voluntary and you can withdraw at any time. To withdraw from SPARK, pleasesend an email to info@SPARKforAutism.org.

Why is genetic research valuable for the autism community?

Autism is known to have a strong genetic component, but there is no singular cause of autism, and there is still so much we don’t know. In fact, genomic research only recently began to decisively associate specific genes with the disorder. 

Autism is not a single gene disorder—it is likely that hundreds of genes play a role in the causes of autism and the genetic roots interact with environmental factors that also contribute to the causes of autism. 

It is also possible that future treatments will be tailored to only subsets of individuals with autism, depending on their genetics. Genetic information will advance discovery of such treatment. 

One of the major challenges to autism research is that the manifestation is so varied, giving rise to the notion of the autism “spectrum.” This wide range of manifestations makes it hard to research causes or treatments for autism. Instead of one gene for autism, for example, there are likely hundreds of genes that can combine in dozens of ways to predispose a child to autism. In fact, the scientific community often now speaks about "the autisms." 

Scientific research requires a large sample size, or number of participants, in order to be representative of the full population and limit the influence of outliers or extreme observations. The more participants a research study has, the more confidence we have that any resulting findings will prove accurate. 

One of SPARK’s key goals is to enable research that has not been possible before by dramatically increasing the number of autism research participants. SPARK will link individuals with the scientific community so that participants will have opportunities to help researchers prioritize areas of research. 

A long-term goal of SPARK is to facilitate a “precision medicine” approach to autism that accounts for individual genetic variability, environment and lifestyle. Precision medicine has led to noteworthy advances for specific cancers; many researchers are working toward precision medicine, and SPARK is one such project.

Is SPARK planning to publish its findings?

The SPARK study team will publish findings based on the data that are collected from SPARK participants; in every case, these findings will be shared with the SPARK participant community. SPARK will share its data immediately with the entire research community so that other scientists can analyze and publish SPARK data.

In addition, SPARK will work with a group of experts, including physicians, researchers and bioethicists to evaluate genetic data collected through SPARK. It is possible that researchers partaking in this evaluation may publish their findings in the future. Finally, it is likely that researchers who recruit SPARK participants for their own research studies will publish findings from these studies.

Who is funding and sponsoring the study?

SPARK is sponsored by the Simons Foundation Autism Research Initiative (SFARI), a scientific initiative within the Simons Foundation’s suite of programs. SFARI’s mission is to improve the understanding, diagnosis and treatment of autism spectrum disorders by funding innovative research of the highest quality and relevance.

How can I get more information on the Simons Foundation Autism Research Initiative (SFARI)?

For more information on SFARI, please visit http://sfari.org/.


REGISTRATION
How do I register for/join this program?

Registration can be done entirely online at www.SPARKforAutism.org in the convenience of your home -- day or night. While the registration will involve a few steps, you can start and stop the process and your information will be saved along the way

After I register, what’s next?

Participating families will be asked to review two consent forms: one that asks families to consent to sharing their data with the Simons Foundation Autism Research Initiative and other approved researchers, and the other to consent to DNA analysis, with the option of having findings, if identified, returned. Once consent is provided, saliva kits will be shipped to your family at no cost. 

Eligible individuals in your family will be asked to provide 1 mL (approximately one-fifth of a teaspoon) of saliva. If any individual is not able to spit, sponges will be provided to allow a caregiver to assist in saliva collection by using the sponge to absorb saliva from his or her mouth. The kit will also contain a prepaid shipping box for you to mail the collected saliva back to us at no cost. 

In sum:
Step 1) You consent to share your data with the Simons Foundation Autism Research Initiative and other approved researchers. 

Step 2) You provide us with some basic information about yourself and your family. 

Step 3) You consent to share your genetic data with the Simons Foundation Autism Research Initiative and other approved researchers. 

Step 4) Saliva kits are mailed to you. 

Step 5) You and eligible family members spit into the kits and mail them back. 

Step 6) Your DNA is extracted from saliva, analyzed and stored. 

Step 7) You may be contacted about results.

How much does the program cost?

There is no cost to join SPARK; you will never be asked to donate money as part of this project

What is the time commitment for registering online and providing a DNA sample?

The registration process typically takes between 15 and 30 minutes, and you can start and stop the process and your information will be saved along the way

For children affected by autism, saliva collection may take approximately 45 minutes; however, it may take some individuals anywhere between 15 minutes to one hour to produce an adequate sample

What if the individual with autism or a participating sibling or biological parent unaffected with autism is not able to spit?

If any individual is not able to spit, a cotton swab is included with each saliva kit that allows a caregiver to collect the sample by sponging the inside of the individual's cheek

What types of studies will you ask me to participate in and how often?

As a participant of SPARK, there is no requirement to join specific studies. You are agreeing only to be recontacted about participation in other research projects. 

After you register as a SPARK participant, we may ask you to complete additional surveys, such as a family medical history, services history, etc. Completion of these surveys is not required and you can start and come back to complete a survey at any time, at your convenience. 

As a SPARK participant, you will also have the opportunity to consider joining studies for which you qualify that are conducted by non-SPARK researchers. These studies may be online, over the phone, or in person and can range in topics from genetics to behavioral therapies. There is no obligation to participate in any of these studies, and researchers will contact you only if you indicate an interest.

Will SPARK return to me/my family the non-genetic results from the surveys that I fill out?

Aggregate study results, and where possible and selected by the parent/ adult with ASD, individual survey results will be shared in the form of data graphs and text. Results will be labeled and described in terms of descriptive clinical ranges interpreted from total scores, including “Below Average,” “Average,” “Above Average” for standardized measures, or “High concerns,” “Average concerns” and “Low concerns” for diagnostic screeners with cutoffs


SALIVA KITS
Why is SPARK using saliva to collect DNA?

The best way for us to obtain sufficient quantities of DNA for our analysis is through a saliva sample. Saliva samples offer a convenient method for DNA sample collection as compared to other sources of DNA (e.g., tissue collected via a cheek swab, blood). Saliva collection is a common collection method for research ranging from large scientific studies or even a single personalized medicine test.

Why do you need saliva from my entire family?

The value of this study depends on having DNA from the person with autism and DNA from both of his or her biological parents. Having DNA from the biological siblings also increases the quality of genetic analyses that we are able to perform. We are more likely to discover information about an individual’s autism with the participation of the biological parents and biological siblings.

How are the saliva kits shipped?

Saliva kits will be shipped to the address or addresses that you indicate for each participant. As a reminder, kits may be shipped only within the U.S.

Can I add multiple shipping addresses for different registrants?

Yes, saliva kits can be shipped to multiple locations that you enter during the registration process.

My saliva collection kit hasn’t arrived. Where is it?

After you complete registration with SPARK, it may take up to 14 business days to receive your saliva collection kit. If you haven’t received your kit after 14 business days, please contact info@SPARKforAutism.org.

I’m missing items/items are damaged in my saliva collection package. What should I do?

If your saliva collection kit is damaged or incomplete, please contact info@SPARKforAutism.org.

What countries do you ship to?

As this study is eligible only to individuals in the U.S., we cannot ship internationally

I received my kit in the mail; how do I use the kit and provide my/my child’s saliva sample?

Familiarize yourself with the directions provided along with the saliva collection device, once you receive it in the mail. You or your child should not eat or drink for 30 minutes prior to obtaining a saliva sample

Hold the device to the child’s mouth or if your child is able, allow your child to hold the device and ask him/her to spit into the device (e.g., say, “spit into the tube”). If your child holds the device, be sure to secure the device so that saliva does not spill out of the device

Try to have your child spit several times into the device. Provide praise and encouragement to your child for spitting into the device

It is likely you will not obtain the desired amount of saliva the first time he/she spits into the device (e.g., you must obtain saliva, without air bubbles, up to the line on the device). Provide your child with a break for a few minutes and allow him or her to engage with a preferred activity for a few minutes (e.g., for two to three minutes) 

Following a break, ask your child to spit into the device again

Continue to provide breaks of several minutes from collecting saliva, and re-present the device until you have collected enough saliva to fill to the line indicated on the collection device, without bubbles

It may take many opportunities for your child to spit into the device to collect enough saliva to fill to the line. Please do not give up

For a more detailed overview of the saliva collection kit instructions – including what to do if saliva collection might be more difficult for your child – 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. You can find instructional and modeling videos to help you complete the saliva collection process in the Resources section of your Dashboard.

How do I ship my kit back to you? Where do I send my sample?

Upon completion of the saliva kit, please send your sample in the pre-paid mailer.

What happens to my sample after I send it back?

We will keep your saliva sample in a secure laboratory and DNA will be extracted from your saliva. 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 labeled with a unique study identification number and stripped of your personal identifying information. 


DNA ANALYSIS, RETURN OF RESULTS
What is a "genetic difference" and what type of genetic differences will SPARK uncover?

“Genetic difference” refers to diversity in gene frequencies on a molecular level, and can also refer to differences between individuals or to differences between populations. Through DNA analysis, researchers may discover genetic differences that may or may not cause or be related to autism, as well as genetic differences that are not related to autism. During the consent phase of registering for SPARK, a participant elects whether or not he or she would like to be informed of genetic differences that may be identified through SPARK.

What type of DNA sample will SPARK analyze?

SPARK will ask you to provide genetic data via a saliva collection kit. The saliva sample collected is ~1 mL or approximately one-fifth of a teaspoon. We know this process of spitting can be unappealing or difficult for many members of the autism community, but saliva is an excellent way to provide researchers with information they need. And look at it this way – at least you or your child doesn’t need to get blood drawn!

How long will it take to analyze my DNA? When will information be returned to me?

If and when there are genetic results ready to be returned to you, you and your physician will be contacted by a SPARK study staff member by email. Some potential new causes of autism may take months or years to identify and confirm by SPARK; therefore, meaningful results may not be ready for you until that time. The DNA analysis can be lengthy, taking several months or longer. Please do not feel there is a cause for concern if we do not contact you regarding the analysis of your DNA.

Where are my genetic results?

It may take a long time, possibly several years, before your sample can be analyzed, and not everyone will receive genetic results. If we find a primary genetic cause of autism, and if you gave permission, we will contact you so that we can return the results to the doctor that you designated. If you would like to review or change your permission (authorization), you can do this in your Dashboard.

Will my genetic results be returned to me?

Not everyone in SPARK will have changes in genes that we know to be associated with autism. But if you or your child does, and these are identified in the DNA analysis over the months or years following the study, SPARK may be able to return those genetic results to a physician or certified genetic counselor that you designate. Participants will be advised to schedule an appointment with their designated provider (in-person, by video or by telephone) to learn of and discuss the results

If you do have genetic results returned to you as part of this research study, they will be put into your medical record. Given this, there may be insurance implications you should be aware of. A federal law called the 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.


How will my data be protected?

We work hard to keep your personal information private, but we cannot guarantee total confidentiality. All identifiable information about you/your dependent will be replaced with a study code. To prevent unauthorized access to your personal information, all research data and records will be stored electronically in a secure, encrypted, password-protected database. We will not release information about you or your dependent to others, unless required by law. Our third-party service providers and consultants are legally required to keep all participant information confidential. We will never publish research or media articles on any forum that identifies anyone without that person’s express permission. If you agree to participate in an additional study, the study sponsor may keep your research data and records indefinitely.

How will my personal identifying information be stripped from my DNA and other personal data that I provide to SPARK?

Participating individuals with autism, biological parents and siblings will share personally identifying information needed to generate a special code called a Globally Unique Identifier (GUID—for more information about GUIDs, please see https://ndar.nih.gov/tools_guid_tool.html). GUIDs serve as a universal subject ID that allow researchers to share data about you, the study participant, without exposing any of your personally identifying information

Will the information I provide be shared with third parties?

Information submitted as part of this project will be de-identified and provided to researchers. It will never be shared with any external third parties without your consent

By participating in SPARK, you will be allowing SFARI to provide your research data to the National Database for Autism Research (NDAR). NDAR is a data repository of autism research by and for researchers from around the country. Data in NDAR will be stored without names or other identifying information, and will be kept confidential

Who will have access to my genetic information?

Your genetic information from this study (with all of your personally identifying information removed) will be made available to qualified researchers, so that scientific and treatment advances can be made as rapidly as possible

If I withdraw from SPARK, what happens to my data?

Should you withdraw from SPARK, information on you or your dependent that has already been gathered and used by researchers cannot be taken back from them. However, no new information identifying you will be gathered or shared by SPARK after the date of your withdrawal from the study.

What is an IRB? Does SPARK have approval from an IRB?

An Institutional Review Board (IRB) is a committee that has been formally designated to approve, monitor and review biomedical and behavioral research involving humans. The purpose of the IRB process is to ensure that appropriate steps are taken to protect the rights and welfare of people participating as subjects in a research study and to ensure that the research is conducted in accordance with all federal, institutional and ethical guidelines

Yes, the SPARK study protocol was approved by the following Institutional Review Board (IRB)

Western Institutional Review Board 1019 39th Avenue SE Suite 120 Puyallup, WA 98374-2115 


TECHNICAL
I forgot my username or password. What do I do?

Your username is the email address you used when you registered with SPARK. If you forgot your password, you can reset it by clicking here or selecting “Login” on SPARKforAutism.org. On the login page, click on the “Forgot Password” link.

How do I invite other people?

During the registration process, you will be prompted to add siblings and invite biological parents of the individual with autism. If you need to add siblings or biological parents after you completed registration, we will have a Family tool in the Dashboard. Please check back for more information.

I invited someone to SPARK and that person hasn’t joined. What do I do?

If you have invited someone to SPARK who has not yet joined, please double-check to make sure you used the correct email address for him or her and, if so, that the message did not go into his or her spam folder. The SPARK study team will send up to three reminder messages to individuals invited to join by a SPARK participant. After this period, the SPARK study team will make no further attempts to reach that individual. 


CONSENT
Where can I get a copy of my signed consent forms?

You can find copies of your signed consent forms in your 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. It is done with persons who are not independent or too young to give informed consent but who 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 will explain this information and ask if he or she agrees. Assent by itself is not sufficient to participate, however. If the child gives assent, informed consent must also be obtained from the subject’s parent or guardian. For SPARK, all children ages 10 through 17 and dependent adults are asked to assent, if they are capable.

Can I receive genetic results if I don’t consent to share my 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, so we will not have a saliva sample to analyze in order to send you results.

What if I want to change my consents or assents?

If you would like to adjust your consents or assents, please contact us at info@sparkforautism.org.

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 a biospecimen and share your genetic data with researchers. However, since we will not send a saliva collection kit to you, we will not have a saliva sample to analyze in order to send you results. 


GIFT CARDS
When will I receive my Amazon.com Gift Card Code?

We will send you an email every year to check if your information has changed and you will be asked to complete some surveys online. You will get a $10 gift card each year if you complete all of the surveys. If you sign up for more research studies in the future, there may be other additional compensation.

I sent in my saliva kit. Why haven’t I received a Amazon.com Gift Card Code?

It may take several weeks for us to receive the kits and verify that the samples can be analyzed. Please check your study dashboard to find out the status of your kit(s).

I 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 card, 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.

I enrolled my two children with ASD and their other biological parent, but I only received $50 worth of gift cards. How come?

Amazon.com Gift Card Codes for participation in SPARK are provided per family rather than per the number of individuals with ASD enrolled. Therefore, the maximum amount of gift cards a participating family is eligible to receive is $50. Please do not hesitate to reach out to us at info@SPARKforAutism.org if you have any additional questions.

My Amazon.com Gift Card Code never arrived/my gift card code was used by someone else. What do I do?

Please email info@SPARKforAutism.org if you have additional questions about your Amazon.com Gift Card Code.

How do I redeem my Amazon.com Gift Card Code?

To redeem an Amazon.com Gift Card Code that you receive for your participation in SPARK, you must first have an Amazon account. If you do not have an account with Amazon, you can set it up here. Once you are logged into Amazon, you can redeem your code by clicking "Your Account" in the right corner of the page. You will then be directed to a new page where you will click on "Redeem a Gift Card" under the "Amazon Wallet" section. After you click on "Redeem a Gift Card", you will be directed to a new page. On this page you will enter the 14-digit alphanumeric code that you received in the email from SPARK and click "Apply to your balance". You will now have the funds available to make any purchase on Amazon.


GENETICS
What genes are being analyzed as a part of SPARK?

The SPARK gene list can be found here.

There is no history of autism in our family. How can genetic analysis help me understand my or my child’s diagnosis?

Autism spectrum disorder can result from many different genetic changes. In some cases, these changes do run in the family and are inherited. In many other cases they are not inherited from the parents, but start new in the child.

How can genetic changes be unique to the child, rather than passed down by a parent?

Scientists have discovered so-called “de novo” mutations, which occur for the first time in a parent’s sperm or egg or in the developing embryo. Since these mutations occur for the first time in the sperm or egg, the parent is not affected. The effect of the mutation is only in the child.

Will genetic analysis definitively identify the source of my or my child’s autism?

The analysis performed by SPARK researchers may or may not identify a genetic mutation that is the major cause of your or your child’s autism. Autism is not only caused by genes, so not everyone will have a genetic cause of autism. In addition, over time we will learn more about the genetic causes of autism, so we anticipate that we will be more and more successful at identifying the genetic causes of autism. We may contact you periodically to give you updates related to your sample.

Will anything change if a genetic cause is identified?

Obtaining a specific genetic diagnosis could help you connect with other individuals or families with the same diagnosis. It may also help you to participate in scientific research and clinical trials for new treatments specific to your or your child’s genetic results. Having a genetic diagnosis may help you or other family members determine whether you or they are at increased risk to have a child with autism.

Will this genetic analysis identify a child’s biological father or mother?

If saliva samples are submitted from 3 individuals reporting to be a biological family, the genetic analysis that we will perform can identify whether the samples submitted are from the person’s biological parents. If you participate and we determine that an individual reporting to be a biological parent is not, we will not reveal this information to you or anyone else.

What is the difference between genotyping and sequencing?

Genotyping and sequencing are two terms you may hear in reference to obtaining information about DNA

Genotyping is a common method that scientists use to get information about your genome, or your complete set of DNA, at a subset of individual spots spread across your genome

Sequencing is a method that can determine the exact sequence of a certain length of DNA. The exact methods that the SPARK study will use to analyze your genes may change over time to include both genotyping and sequencing analyses.