IAN Research Process - Frequently Asked Questions
What is IAN Research?
IAN Research is an online Autism Spectrum Disorder (ASD) research project.
By answering secure online questionnaires from the comfort of home, parents of children on the autism spectrum can share information about their child's diagnosis, behavior, family, environment, and services received, while adults with ASD can share valuable information about their experiences, strengths, and needs. Researchers from throughout the world will work with this information to learn about the effect and interaction of factors such as genetics, environment, and treatment, as well as the current situation, well-being, and needs of those affected by ASD.
IAN Research will also serve as a research registry, matching participants who give their permission with other local and national autism research projects studying ASDs. (Many research studies are delayed or even fail because they cannot find people to take part in the study.)
How do I register to participate in IAN Research?
To participate in IAN Research you will need an IAN ID and password. (If you have already set up an IAN ID and password on the IAN Community, please use the same ones on IAN Research. After logging in to Research for the first time using your IAN ID and password, you will skip the first few steps below and be sent directly to the "Registration Type" question in Step 5.)
- Click on the JOIN NOW button at the top of the IAN Research page (www.ianresearch.org).
- Choose your IAN ID and password and provide your email address, then click the REGISTER button. (Be sure to write down your IAN ID and password and keep them in a safe place.)
- We'll send an email confirmation of your registration. Open the email that we send you and click on the link in the email to confirm your registration.
- You will be taken back to IAN Research. Type in your IAN ID and password, then click Login.
- Next, you will select your registration type by choosing one of the options. (This is where you tell us whether you are an adult with ASD, a guardian of an adult with ASD, or the parent of a child with ASD.)
- Now you will be taken to the "Registration and Consent" page. First, you will provide your contact information. Then you will read the research participant consent form. The first consent form that appears is for you -- the person who is actually registering. Mark the box that says "I have read, understand, and agree."
- You will now be asked to choose and confirm a 4 digit PIN. (This PIN provides an additional level of security and serves as a kind of electronic signature.)
- If you are an adult with ASD, you are now finished registering. If you are the parent of a child with ASD or the guardian (Legally Authorized Representative) of an adult with ASD, you will now be taken to a "Registration and Consent" page for the person with an ASD. (The first consent form was for you; this one is for them.) Enter that person's name and information; read the consent form; and mark the box that says, "I have read, understand, and agree."
- You will be asked to enter your PIN again. (Your PIN serves as a kind of electronic signature.)
- Now you are ready to get started on your Research!
I already have an IAN ID and password that I got on IAN Community. Do I need to sign up again to participate in IAN Research?
No. Just log on to IAN Research using the same IAN ID and password you set up on the IAN Community. You will be sent directly to the "Registration Type" question described in Step 5, above.
I did not receive a "Verification" e-mail, so I can't continue with registration!
Once you submit an IAN ID, password, and e-mail address, you are supposed to receive a "verification" e-mail. If you do not receive this e-mail, which guides you to the final steps of the registration process, please e-mail the IAN team (email@example.com) from the account you used to set up your IAN ID and password. We will help you to verify your account and continue with the research process.
I received my "Verification" e-mail, but I clicked on the link and it didn't work!
Once you submit an IAN ID, password, and e-mail address, you are supposed to receive a "verification" e-mail. Once you click on the "verification" link, you are supposed to be guided through the rest of the registration process. If you receive the "verification" e-mail, but the link contained within it does not work, please e-mail the IAN team (firstname.lastname@example.org) from the account you used to set up your IAN ID and password. We will help you to verify your account and continue with the research process.
Setting Up Your "Family Profile" Page
What is the "Family Profile" page?
The "Family Profile" page is your personal IAN Research page. It displays all the people in your family, and whether or not you still have research tasks to complete for any of them. This is where you go to work on your IAN Research questionnaires. Use this page to create your family profile, answer questions about yourself and other family members, and complete new research activities.
How do I complete my family profile?
Parents of children with ASD under the age of 18
The first time you see the family profile page, it will include you and your child with an ASD based on information you provided during registration. To add your other children, click on the "Add a Child" button. Next, select whether you are adding a biological or adoptive child, and whether they are younger than 18 or 18 years and older. Depending on the age of your child, you will be asked to provide additional information. To add other parents, click on the "Add a Parent" button. After you provide a minimum amount of information about the other parent(s), you will be given an opportunity to invite the other parent(s) to join your family profile. (Adults can only give consent for the research for themselves and their children under age 18; they cannot give it for other adults. That is why you can only invite other adults to participate.)
Independent adults with ASD
The first time you see the family profile page, it will include only you. If you have no children, you are already done. If you have children, add them to your family profile by clicking on the "Add a Child" button. Depending on the age of your child, you will be asked to provide additional information. To add your children's other parent(s), click on the "Add a Parent" button. After you provide a minimum amount of information about the other parent(s), you will be given an opportunity to invite the other parent(s) to join your family profile. (Adults can only give consent for the research for themselves and their children under age 18; they cannot give it for other adults. That is why you can only invite other adults to participate.)
Guardians or "Legally Authorized Representatives" of Adults with ASD
The first time you see the family profile page, it will include you and the adult with ASD you identified during registration. If you are the adult's parent, in addition to being their Legally Authorized Representative (LAR) or guardian, you can create a family profile that includes your self, the adult's other parent, and your other children. To add your other children, click on the "Add a Child" button. To add other parents, click on the "Add a Parent" button. After you provide a minimum amount of information about the other parent(s), you will be given an opportunity to invite the other parent(s) to join your family profile. (Adults can only give consent for the research for themselves and their children under age 18; they cannot give it for other adults. That is why you can only invite other adults to participate.)
If you are a Legally Authorized Representative (LAR) or guardian who is not biologically related to the adult with ASD, you do not need to add any other people to your family profile. If, however, you are biologically related to the adult with ASD, and have a child with ASD of your own, your family tree will be quite relevant to ASD research. In that case, please do add your own children, both those with ASD and those who are unaffected, and their parent(s), as described above. This may be the case for a guardian who is also the sibling, aunt or uncle, grandparent, cousin, or other relative of an adult with ASD.
If my spouse decides to participate, why do we each need separate and distinct e-mail addresses?
To maintain the highest standards of privacy protection, it is essential that each individual adult user have his or her own distinct e-mail address. If you and your spouse do not have distinct e-mail addresses, we suggest one of you obtain a second e-mail address from yahoo.com, msn.com, or one of the other providers of free e-mail accounts. Alternately, internet providers (e.g. a dial-up, DSL, or cable companies) often allow their customers a number of e-mail addresses. If you are paying for services through such a company, you might want to check to see if you have used all the e-mail accounts you are permitted.
What if I have two or more children with an ASD?
If you have two or more children with an ASD, you will sign up the first child during the Registration process. When you go on to create your Family Profile and "Add a Child," you will have a chance to indicate that the child has an ASD. That child will then be assigned forms for a child with ASD rather than for a non-affected sibling.
Why do you want me to add all my children to my family profile, even the ones who don't have an ASD?
We ask you to include all of your children in IAN Research for a couple of reasons. First of all, we recognize that when a child is diagnosed with an ASD, the entire family is impacted. We want to capture the nature of this impact on siblings. Second, many ASD-focused research projects are looking for sibling volunteers. Sometimes, siblings are used as a comparison group. Other times, such as in early detection studies, younger siblings are monitored closely for signs of an ASD.
Why do you want me to add other parents?
We would like all biological and adoptive parents of children with an ASD to participate in IAN Research. Different parents often have different perspectives and experiences regarding a child's diagnosis. We want to better understand these differences. In addition, genetic studies are often looking for entire families to participate.
Why does my profile show that there are no tasks for the other parent to complete?
IAN Research is designed so that adults within the family profile can only view the tasks specifically assigned to them -- those relating to themselves and their biological or adopted children. For example, a mother will be able to view and complete the questionnaire(s) about her and about her biological and adopted children. She will not be able to complete (or view) the questionnaires completed by a father about himself. (Adults can only give consent for the research for themselves and their children under age 18; they cannot give it for other adults. That is why you can invite other adults to complete their own consent and profile, but you can neither do it for them nor view their completed questionnaires.)
If I invite another parent to my family profile, can he/she see my responses to the questions?
Another parent within your family profile cannot see your responses to the questions. They can only see their own information and that of their biological or adopted children. Spouses cannot see each other's information, whether they are still married or not. (For example, an ex-husband would be able to see his own information, and the information about the kids he had had with the mom participating, but not about kids she had from her second marriage that were not related to him biologically or through adoption. Similarly, he could add his own biological kids from a second marriage, but his ex-wife would not be able to see those, although she would be able to see responses about the children they had had together.)
Corrections and Modifications to Your Data
I entered data, but now I want to modify or edit it...and the system won't let me!
E-mail the IAN team at email@example.com and tell us what you would like to change. We will make the modifications, or help you to do so.
I "finalized" a form, only to realize later that I had made a mistake!
E-mail the IAN team at firstname.lastname@example.org. We may be able to help re-open the finalized form so you can still make changes.
Privacy and Security
How will IAN Research use and protect my information?
IAN Research collects two types of information from you. First of all, we collect information that can be used to contact you and your family members, including name, home address, e-mail address, phone number, and date of birth. This information is kept private and secure. It is only accessible to a small number of IAN staff members. This information will never be given to anyone else without your permission. If, for example, you are interested in volunteering for additional research projects, IAN Research will send you information by e-mail about ASD-related studies looking for volunteers. You will then be able to contact the staff of a specific project if you so wish. They will not be given any of your information by the IAN Project.
IAN Research also collects information about a person wit h ASD's diagnosis, behavior, environment, treatments, and services received, as well as information about other family members. This type of information is stored separately from identifying information such as name, home address, e-mail address, phone number, and birth date. Although some of the information we ask about you and your family may be personal, it is saved anonymously and combined with similar information from many other families. Qualified researchers throughout the world will have access to this information to expand our understanding of autism.
Why don't you have more questions about (fill in the topic)?
We will be constantly developing new questionnaires to address more and more topics. Use the IAN Community Discussion Forums or the Contact Us function to let us know what you feel we are missing. Based on input from researchers and from you, you can rest assured that we will be asking more questions.