Does Spark Need To Be Registered

FAQ

For questions about SPARK and COVID-19, delight visit SPARK and COVID-19: Participant Q&A.

Near SPARK

What is the purpose of SPARK?

SPARK aims to aid scientists find and better understand the potential causes of autism. As part of this effort, we study Deoxyribonucleic acid from people with autism and from their family members who may or may not accept 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 enquiry.

Why should I have part in SPARK?

Past participating in SPARK, yous will help shape the future of autism research. Your Deoxyribonucleic acid could spark the next genetic discovery. With DNA from thousands of families beyond 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 exist able to go updates on the latest research, join other autism research studies, detect possible genetic causes of autism in your ain family unit, and power future autism research for years to come.

Who can take office in SPARK?

You lot can take function in SPARK if y'all or your dependent(s):

Have a diagnosis of autism spectrum disorder (ASD). This can include Asperger syndrome, autism/autistic disorder, and pervasive developmental disorder–non otherwise specified (PDD-NOS).
Currently alive in the U.Due south. or are serving in the U.Due south war machine abroad.
Can read and understand English language.

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 annals on behalf of themselves and their dependent(s). In relevant circumstances, legal guardians can invite biological parents of their dependent(south) to join if they are able/choose to.
An independent adult with a professional diagnosis. Adults can register for themselves and tin invite biological parents and full adult siblings to join every bit well. They can too register their own dependent(south), if applicable, during their registration. Delight note: If you take an eligible diagnosis (see above), you tin take part in SPARK even if your siblings or parents do not.

If my child has autism, who else in the family can have part in SPARK?

Family members who can bring together SPARK include:

Both of the child(ren)'southward birth parents.
Whatsoever additional children with a formal ASD diagnosis. They must be under the age of 18 or your legally dependent developed kid.
One full biological sibling of the kid with autism who does non have an ASD diagnosis can be added. However, parents who have more i kid with ASD may add all siblings without autism.

Tin can I take part in SPARK if I am or my child is adopted?

Aye.
For more, see: "Who tin take role 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?

Aye. 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 data to get available to height researchers who are moving autism research forwards and helping to discover answers for the community at big. Participating also means that the family will have the opportunity to accept part in additional research opportunities if they are interested. Such opportunities may go available through SPARK's research match programme. You lot can read more about SPARK'south research friction match plan here.

Can I or my kid take office 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'due south goals is to notice more than of these.

Can I stop taking office in SPARK?

Yes. You can stop taking role in SPARK at any time. Your family's privacy is a summit priority of our study, and participation in SPARK is completely voluntary. Y'all need but ship an electronic mail to info@SPARKforAutism.org if yous would like to withdraw.

Why does SPARK need to study and then many people?

The more people who enroll in SPARK, the more than genes and genetic changes related to autism we are probable to discover. When we compare the DNA of thousands of people, we tin find differences betwixt individuals. Sometimes these differences are related to autism, and other times they are not. SPARK aims to enroll fifty,000 families affected by autism in order to move autism research frontwards more chop-chop.

Volition SPARK share its findings?

Yeah. SPARK data will be shared with the entire autism inquiry community (doctors, experts and researchers) then that they tin study and acquire from it. We are likewise publishing findings in scientific journals and returning information to our participants via report reports.

Who pays for SPARK?

SPARK is sponsored by the Simons Foundation Autism Enquiry Initiative (SFARI). SFARI'southward mission is to improve the understanding, diagnosis and handling of autism spectrum disorder (ASD) by funding cutting-border enquiry of the highest quality and significance. For more than data on SFARI, please visit https://sfari.org/.

What are clinical sites?

SPARK clinical sites are a network of 25 autism inquiry centers at universities and hospitals throughout the country that accept partnered with SPARK. These sites help educate their local communities about SPARK, enroll new participants, and run autism research studies of their ain. Click here to learn more and to run into if there'southward a SPARK clinical site most you!

REGISTRATION

How do I bring together SPARK?

Enrollment can exist done entirely online at www.SPARKforAutism.org. It will involve several steps. Each independent adult participant must have their own email address. Yous can start and stop the registration process at whatever fourth dimension, and your information will be saved along the fashion. You besides have the option of completing your registration at one of our 25 clinical sites across the country. Click hither to see if at that place's a site nigh you!

After I join, what's next?

Subsequently you register, the website will accept you to your study dashboard. There you can bank check on the status of your saliva kit and gift card, if applicable. You volition also be asked to complete several surveys. You will receive information back from the surveys.
If yous consented to provide a saliva sample or samples for DNA assay during the registration process, you volition receive your kit(s) in the mail about 2 to three weeks after you registered. Once y'all transport your saliva back, we will analyze information technology to search for genetic changes related to autism. If we find a genetic change related to autism in your sample, we will contact you.

Too, when you enrolled in SPARK, we asked if we could contact you about other autism research that may be relevant to y'all or your family unit. If you agreed, y'all may be invited to join these other studies via email. Participation in these studies is completely voluntary.

Does it price money to participate?

No. At that place is no toll to join SPARK. You will never be asked to give money as part of this projection.

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

Enrollment normally takes between fifteen and thirty minutes. You can start and end the process at whatever fourth dimension, and your information will be saved along the way. For the saliva sample drove, producing enough saliva can take anywhere from 15 minutes to an hour.

I forgot my login data. What do I do at present?

Your username is the email address you used when y'all registered with SPARK. If y'all 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, y'all may exist prompted to invite biological relatives like parents or siblings via email. Yous tin also invite other family members to participate afterward you've registered by using the invitation tool on your dashboard. We will allow you lot know when other invitation features become available. Please annotation: Nosotros know that each family in our community is unlike from the next, and we do non await anyone to invite family unit 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 practice?

If yous invited someone to participate in SPARK and they haven't joined yet, delight double-cheque to make certain you used the correct electronic mail accost during the invitation procedure and ask them to check that the invitation did not go into a spam folder. If in that location is a problem, you can resend an invitation from your study dashboard. The SPARK report team will send upward to three reminder letters to individuals who were invited to join SPARK past some other participant. After that, the SPARK study squad will brand no farther attempts to reach that individual.

What if I or my child can't spit?

If you lot or your kid are unable to spit, you tin use the sponges that are included with each saliva kit. Caregivers can collect the sample past sponging the inside of the person's cheek and pressing the sponge against the notch of the funnel so that the saliva volition flow into the tube. You tin can find video resources that will further explain the saliva collection process hither.

SURVEYS AND RESEARCH OPPORTUNITIES

What is the purpose of the surveys that appear on a participant'due south study dashboard?

Nosotros use surveys to collect medical and behavioral data. The number and types of surveys that you receive on your written report dashboard volition vary from person to person.

What surveys will I need to complete?

The number and types of surveys you lot will exist asked to complete depend on a number of factors, such as whether or not the individual has an ASD diagnosis and the individual'south historic period. None of the surveys on your study dashboard are required, but we're grateful when you lot complete them. They will help usa learn much more. But the master account holders and/or invited family members with an ASD diagnosis will receive surveys. For instance, if y'all invite your child'southward biological parent to bring together, they volition non be asked to complete any surveys on themselves or their dependents unless they take an ASD diagnosis.
The surveys aid united states of america collect information well-nigh:
Other medical weather condition. Behavior. Social and physical evolution. Any services received. Family medical history.

Will SPARK tell me nearly the results from the surveys that I fill out?

Generally, yeah. While the results exercise non represent a clinical evaluation, it is our hope that participants find value in survey results. For example, if a family'south survey results evidence that an individual has a lot of concerns about a family member, the private could talk to their doctor, school commune, etc., and perhaps even use the results equally a starting place for that conversation.

What other types of studies will I have access to? What is "enquiry match"?

Past joining SPARK, you lot will have the adventure to learn about and participate in other studies led by autism researchers from around the globe. We telephone call this program research match. For these studies, you will only exist contacted if y'all or your family meet the enrollment criteria. You exercise not take to take part in whatever of these studies. It is your option. If you decide not to join 1 study, it will not prevent you from joining others. Studies may have place online, over the phone, or in person. They range in topics from genetics to behavior interventions.

GENETICS

What is a "genetic deviation"? What type of genetic differences will SPARK uncover?

Our genes comprise the instructions, or code, that tell our cells how to grow, develop and work. "Genetic deviation" refers to a change in a factor. These differences tin range from being harmful to helpful. Some can accept no effect.
Once our lab receives a family's samples, we wait for genetic differences that are definitively linked to autism. If such changes are constitute and confirmed, the family is contacted nigh those results. SPARK volition render the genetic outcome either through a SPARK genetic counselor or through the family unit'due south own medical provider.
Since new autism genes are discovered every year, each family unit's genes will exist 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 grade of a clinical report just if nosotros discover a genetic change associated with autism.
Not everyone in SPARK will have genetic findings linked to autism. Based on what nosotros know today about genes that are linked to autism, SPARK scientists look to find a genetic difference linked to autism in v% to 10% of people in the report. This number will increase equally we learn more about autism and identify more genes that are linked to autism.
There is too a chance that we volition find genes linked to autism in your sample but after we take studied genes from many other families and compared them with yours. In this case, it could be years before there are results to render. Go on in mind that genes are not the merely cause of autism, then not all people with autism will accept a genetic departure.

How volition SPARK go a sample of my genes?

SPARK can collect an individual'south genetic data from a pocket-size sample of saliva. Nosotros'll mail a saliva collection kit to your dwelling. You tin can either spit directly into the tube or apply the sponges provided in the kit to collect saliva.
Nosotros know the procedure of spitting tin 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 volition contact the relevant participants when these become available.

I sent in my saliva sample. What happens now?

See the journey your DNA takes from saliva sample to genetic results (PDF format). In one case 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 cheque to run into if in that location is plenty DNA in the saliva for it to be usable.
After processing, the sample is stored until nosotros send it out for sequencing. We do not sequence samples as they come in. Instead, for logistical reasons, we expect until we have large batches of samples set up. Storage does not touch the integrity of the DNA.
During sequencing, we await for genetic differences that are definitively linked to autism. If such changes are plant and confirmed, the family is contacted regarding those results. Information technology can take many months to study genes and confirm findings. If we detect genes linked to autism in your sample, information technology will exist at least 1 yr from the date nosotros get your sample earlier the results will be ready to share.

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

When SPARK has a genetic result to return to a family unit, the primary business relationship holder is contacted past e-mail. The family can cull if they would similar to receive the result through a SPARK genetic counselor or through their own medical provider.
For more, see "Tin can having genes linked to autism touch my health insurance coverage?"

Will SPARK tell me almost genetic differences not related to autism?

Very rarely. In near all cases, the genetic results nosotros 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 volition studying genes help people with autism?

The best inquiry in our field has shown that genetic differences play a big function 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 notice others.
Learning about the genetic causes of autism volition help united states find potential treatments and preventive measures for things that are common within subtypes of autism, like digestive issues and seizures.
Since anybody 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 exist tailored based on your or your child'south particular causes of autism.

At that place is no history of autism in our family unit, so where did my or my kid'southward autism come from?

Different types of genetic changes tin 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 procedure of copying Deoxyribonucleic acid is not perfect. This change to the genetic code is considered a "de novo" (new) change. Studying genes can help united states observe changes linked to autism no matter when they take place.

Volition it help to know that I or my child has genes linked to autism?

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

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

Why practice you demand saliva from multiple family members?

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

If a genetic cause is plant, will my wellness insurance coverage exist afflicted?

Nether the federal Genetic Data Nondiscrimination Act (GINA), having genes linked to autism should not touch on your existing wellness coverage or whether you lot qualify for health coverage. To larn more than, please visit the GINA website here.

When studying genes, can you lot tell if someone is the child's biological father or mother?

Yep. We can tell from saliva samples whether people are related. Nonetheless, if nosotros detect that someone is not the biological parent, we volition non share this data with you or anyone else.

CONSENTS

Where can I go a copy of my signed consent forms?

Yous can find copies of your signed consent forms on your study dashboard nether "My Documents."

What if I want to change my consents or assents?

If you would like to alter your consents or assents, please contact united states of america 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 enquiry. Assent is used with people who are dependent or are too young to requite 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 equally subjects. To receive assent from your child or dependent, yous must explain this data 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 x 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?

Aye. You can participate in SPARK and contribute behavioral information without consenting to submit saliva and share your genetic information with researchers.

Tin can I receive genetic results if I don't consent to share my data with researchers?

No. If you exercise not consent to share your genetic information, we volition not ship a saliva drove kit to you. Therefore, we will not have a saliva sample to analyze in order to send you lot results.

Gift CARDS

What activities in SPARK tin earn an Amazon.com Gift Card code?

SPARK is very thankful for our active customs of participants! To express our gratitude, we upshot Amazon.com Souvenir Card codes to participants who complete certain tasks.
Your Amazon.com Gift Bill of fare code volition be sent to you in the course of an alphanumeric code to use toward purchases on Amazon.com and volition no longer appear on your dashboard. You lot will receive this code via email.
Saliva Donation:
Within a few weeks of receiving adequate saliva samples from a family, the principal 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. $l 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 Souvenir Bill of fare code.
Other Study Opportunities:
If you sign upwardly for more enquiry studies in the future, such as through our research matching programme, there may exist additional compensation.

Who receives the Amazon.com Gift Card code?

Amazon.com Souvenir Card codes for participation in SPARK are provided per family rather than per private enrolled. They are emailed to the primary account holder.

When will I receive my Amazon.com Gift Card code?

Your Amazon.com Gift Card lawmaking 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 souvenir code will be issued within a few weeks of confirming receipt of an adequate saliva sample or samples. Yous can track the progress of your sample(southward) 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 however has not arrived. What do I do?

Please offset check your SPARK dashboard for whatever updates on the status of your Amazon.com Souvenir Card lawmaking. Please e-mail info@SPARKforAutism.org if you lot have additional questions.

I sent in my family'south saliva and received a $25 Amazon.com Souvenir Card code. Why didn't I receive a $l Amazon.com Gift Bill of fare code?

If yous received a $25 Amazon.com Gift Carte du jour lawmaking instead of a $50 lawmaking for your saliva sample(southward), it is because someone yous invited to participate did not return a complete saliva sample. If you have farther questions about this, please review the data consent form found in the "My Documents" department of your dashboard or contact info@SPARKforAutism.org.

How do I redeem the Amazon.com Gift Carte du jour code?

To redeem the Amazon.com Gift Card Code you must beginning have an Amazon account. If you do not have an business relationship with Amazon, you can set one up hither. Once you are logged in to Amazon, yous tin redeem your code by clicking on "Accounts and Lists" then "Your Account" well-nigh the upper right corner of the page. You will so be directed to a new page where you volition click on "Souvenir Cards". A new page will open where y'all can redeem a souvenir card. After you click on "Redeem a Gift Menu", you volition exist directed to a new page. On this folio yous will enter the alphanumeric 14-character code that yous received in the email from SPARK. Click "Apply to your balance". You will now accept the funds available to brand any buy on Amazon.

I am having problem with my Amazon.com Gift Card code. What do I practice?

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

SALIVA KITS

Why is SPARK using saliva to collect DNA?

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

Why practice you lot demand saliva from anyone beyond the child or adult with ASD?

Nosotros are more than likely to find data nearly autism if we tin can compare an private'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 tin be shipped only within the U.South. Individuals who are stationed overseas in the military should use their current FPO or APO address.

Tin I give multiple shipping addresses for different registrants?

Yep. Nosotros volition ship saliva kits to multiple addresses you give united states at registration.

My saliva drove kit hasn't arrived. Where is it?

Subsequently you enroll in SPARK, information technology will take ii to three weeks for the kit(south) to be delivered to the address(es) you provided. Please periodically check your SPARK dashboard for whatsoever updates during that fourth dimension. If you lot notice an error, please double-check that your accost is given correctly. If y'all need to make changes to your address, you can do so by visiting your SPARK dashboard. If you have not received your kit afterwards three weeks, please contact info@SPARKforAutism.org.

My saliva kit package has missing or damaged items. What should I practise?

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

What countries practice you ship to?

We just ship saliva kits to addresses within the Us. Individuals who are stationed overseas in the military machine should employ their current FPO or APO address.

I received my saliva kit in the mail service. How practice I use the kit and provide the saliva sample(s)?

Directions in the saliva drove box will have you lot stride by step through the collection process. You and/or your child should non consume or drink for xxx minutes before spitting. Tips for parents: Hold the tube to your kid'south mouth, or if your child is able, allow them to concord the tube and ask them to spit into it. If your kid holds the tube, don't let the saliva spill. You must get enough saliva, without air bubbling, 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 interruption for a few minutes in between spitting. Then spit or ask your kid to spit into the tube once again. Experience free to continue taking breaks and having them try once more until yous take nerveless enough saliva to get upwardly to the line.

During these breaks, information technology is important to non close the tube, so that the preserving liquid does not release and mix with the saliva just however.

Nosotros know the saliva collection can be challenging, simply we appreciate your patience and connected efforts. For more detailed information on the saliva collection kit instructions—including what to exercise if you cannot get your kid to spit into the tube—please click here.

I'thou nevertheless having trouble completing my or my child'southward saliva collection kit. What should I practice?

Completing the saliva collection can exist difficult for many people. Hither you lot will discover a helpful instructional video to walk you lot through the saliva drove process. The instructions that came in the box as well include a section for if you and/or your kid cannot spit. Additionally, if you lot and/or your child(ren) are unable to collect saliva past spitting or using the sponge – nosotros are working on providing alternative collection methods. These would include claret draws and cheek swabs, and we volition contact participants when these get available.

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

After completing saliva drove, please return your sample in the postage-paid box the kit came in. You tin drop it in the mail or manus information technology 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 information technology back?

We will go along your saliva sample in a secure laboratory, and if information technology passes quality command, we volition extract DNA from information technology. Enquiry staff may carve up the samples into smaller amounts and freeze them, so they volition be available for enquiry for an indefinite period of time. The samples will exist stripped of your personal identifying data and labeled with a unique written report identification number.

PRIVACY

How is SPARK protecting my data?

Here are some of the ways nosotros 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 permit researchers to share data almost you without sharing anything that could identify you.
All your research information and records are stored electronically in a secure, encrypted, password-protected database.
We volition not release research data nigh you lot or your child to others, unless required by law.
We volition never publish anything about the report on any forum that could identify you lot without your express permission.
Our tertiary-party service providers and consultants are legally required to continue all your research data individual. 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 volition never be shared with third parties without your consent. SPARK maintains a big data resource for qualified scientists around the world. Before researchers can use this data, their applications must exist reviewed and canonical.

Earlier any of your enquiry data from SPARK is shared for other autism research, all information that could place you lot is replaced with a global unique identifier (GUID). GUIDs allow researchers to share enquiry data about you without exposing anything that could identify you.

If I stop taking part in SPARK, what happens to my data?

On the appointment you lot withdraw from SPARK, nosotros will cease request for your enquiry data and sharing it with other studies. Any information that has already been shared with or used by other studies cannot exist taken back.

If you lot would like to withdraw from SPARK, please ship an email to info@SPARKforAutism.org.

What kind of data does SPARK collect?

SPARK collects ii chief types of data: data that participants share through surveys and the DNA information 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, telephone numbers or email addresses shared with anyone outside the enquiry study?

No. Identifying data is only shared with researchers who are using SPARK data for research. You are in control of the information yous share. Nosotros volition not share your information without your permission. If you choose to participate in a study, we volition share your contact information with researchers then that they can contact you.

What happens to my saliva sample after my Dna has been sequenced?

We will keep your saliva sample in a secure laboratory. If we take received enough Deoxyribonucleic acid, research staff may divide the samples into smaller amounts and freeze them, so they will be bachelor 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.

What kind of data is generated from DNA sequencing, and can that data be used to expose an individual's identity?

DNA sequencing decodes the genetic letters that make up an individual'south genome. SPARK only looks at the portion of Dna that codes for proteins, considering virtually genetic differences related to autism are institute in this function of an individual's DNA. The information generated from SPARK's sequencing assay cannot exist used to determine a person'south identity. All sequencing data is stored securely in the SPARK database. Researchers who asking access to SPARK's genetic data must besides hold to store this information deeply and may only apply it for scientific purposes that they designate in their request.

What is generated from the Deoxyribonucleic acid that is provided to SPARK?

The genetic information nosotros generate is stored securely in the SPARK database. SPARK and affiliated scientists analyze this data to better understand the genetic components of autism. Sometimes the results of this enquiry volition appear in scientific journals. The information that appears in these journals cannot exist used to betrayal an private's identity.

Who uses DNA from SPARK?

SPARK study staff and researchers from around the world depend on information technology. Exterior researchers must become through an approval process before they are allowed to access SPARK'south DNA database.

Tin my data ever exist used to identify me or my family unit members?

Information technology is possible that the vendors we work with (for case, a visitor 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 exist shared with researchers through SPARK'due south enquiry matching program unless you requite us permission.

Does SPARK sell information or DNA samples to anyone?

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

Volition the data I share go into my medical tape?

All information shared with SPARK is kept deeply in its database. Merely if you asking and receive a genetic result from SPARK volition this information get into your medical record.

Will my doctor have access to the information that I share with SPARK?

Only with your permission. The only doctor who will receive information from SPARK volition be the one you designate to receive the genetic event should a genetic effect be available.

Will sharing my data impact my ability to obtain life insurance?

The federal Genetic Information Nondiscrimination Act (GINA) makes information technology illegal for employers, health insurers and group wellness plans to discriminate against individuals based on their genetic information. However, if you do receive a genetic upshot through SPARK, the dr. you designated will put this information into your medical tape, and there may be insurance implications.

What data that I share with SPARK will my family members be able to run across?

No other family members tin can encounter 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 identify by requiring that each individual who registers has a unique email accost.

Would police or the FBI ever be able to access DNA or other data collected?

More often than not, no. To protect your privacy, we have obtained a Certificate of Confidentiality from the National Institutes of Mental Wellness. Researchers tin can use this certificate to legally refuse to disclose information that may identify you lot in whatever federal, state or local ceremonious, criminal, administrative, legislative or other proceedings—for example, if there is a court subpoena.

Researchers will use the certificate to resist whatsoever demands for data that would place you, except equally explained beneath:

The certificate cannot be used to resist a demand for information from personnel of the United States federal or land government bureau sponsoring the project and that will exist used for auditing or program evaluation of bureau-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 lot or a member of your family from voluntarily releasing information about your child, yourself or your interest in this research.
If an insurer or employer learns nearly you and/or your kid's participation and obtains your consent to receive research information, and so the investigator may non utilise the Certificate of Confidentiality to withhold this information.

Does Spark Need To Be Registered,

Source: https://wp.sparkforautism.org/faqs/

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