In what way are you interested in participating in the FIND Network?
* must provide value
Choose one: Are you filling this survey out as...
Note: If you have more than one child that you would like to give consent for, please fill out a separate survey.
* must provide value
A guardian giving permission to a child under 8 years old
A guardian giving permission to a child ages 8 to 17 years old
An adult over 18 years old
The consent form must be read and by anyone 18 years or older who is enrolling in the registry as well as by parents/legal guardians of children under 18 who are enrolling. Consent [V.9]_29Jul20
Title of Research Study: 1306M35301 Focus in NeuroDevelopment (FIND) Network.
Researcher Team Contact Information: Dr. Suma Jacob
For questions about research appointments, the research study, research results, or other concerns, call the study team at:
Researcher Name: Dr. Suma Jacob
Researcher Affiliation: Associate Professor of Psychiatry University of Minnesota
Phone Number: 612-625-8448
Email Address: jacoblab@umn.edu
Researcher Name: Dr. Amy Esler
Researcher Affiliation: Licensed Psychologist and Assistant Professor of Pediatrics at the University of Minnesota
Phone Number: 612-626-6340
Email Address: esle0007@umn.edu Study Staff (if applicable): Jaclyn Gunderson
Phone Number: 612-625-8448
Email Address: brink347@umn.edu
Supported By: This research is supported by the University of Minnesota, Fraser and the Autism Society of Minnesota.
What is research?
Doctors and researchers are committed to your care and safety. There are important differences between research and treatment plans:
● The goal of research is to learn new things in order to help groups of people in the future. Researchers learn things by following the same plan with a number of participants, so they do not usually make changes to the plan for individual research participants. You, as an individual, may or may not be helped by volunteering for a research study.
● The goal of treatment is to help you get better or to improve your quality of life. Doctors can make changes to your treatment plan as needed.
Why am I being asked to take part in this research study?
We are asking you to take part in this research study because you or your child have a neurodevelopmental condition such as autism spectrum disorder (ASD), attention deficit hyperactive disorder (ADHD), obsessive compulsive disorder (OCD), tic disorder, or do not have a neurodevelopmental condition but wish to be a control participant in future studies.
What should I know about a research study?
● Whether or not you take part is up to you.
● You can choose not to take part.
● You can agree to take part and later change your mind.
● Your decision will not be held against you.
● You can ask all the questions you want before you decide.
Why is this research being done?
The purpose of the FIND Network is to establish a Network consisting of people with neurodevelopmental conditions, as well as control participants (those whom do not have neurodevelopmental conditions), who wish to participate in future studies. FIND investigators may share your contact information with approved researchers so they can contact you and tell you about their study, but it is up to you to respond if you are interested. By joining the network, you are under no obligation to participate in future research, but simply indicating that you would like to hear about potential opportunities when they arise. You also have the option to receive periodic newsletters via email giving updates on research, resources and events.
How long will the research last?
You will be enrolled in the FIND Network indefinitely. If you wish to remove yourself from The FIND Network for future involvement, you may contact Dr. Jacob or a member of her study staff and request that you be removed from further follow-up. If you wish to have your previous data removed, as well as remove yourself from future follow-up, you may also request that from Dr. Jacob or a member of her study staff.
How many people will be studied?
We expect about 3000 people to participate in the FIND Network.
What happens if I say "Yes, I want to be in this research"?
1. If you agree to participate, you will be asked to fill out a short intake survey (the FIND Network Form) that will ask you questions intended to determine the types of research in which you might like to participate and for which you might be eligible. This should take about 10 minutes to complete.
2. If a researcher at the University of Minnesota or another site has a research study that might be a good fit for you, your name and contact information will be given to that researcher, and they will contact you to see if you are interested in participating in their study. You are under no obligation to participate in any research project, even if you enroll in the FIND Network. You may be contacted for studies as long as your data remains in the FIND Network. You can say "no" to any study you are called about if you are not interested. Only researchers whose projects have been approved by the FIND Network review committee and an Internal Review Board (IRB) will be allowed to contact you.
What happens if I say "Yes", but I change my mind later?
You can leave the FIND Network at any time. Leaving will not be held against you.
If you decide to leave the FIND Network, contact the investigator so that the investigator can remove you from the pool of candidates of participants in future research, and remove your previous data.
Choosing not to be in the FIND Network or to stop being in the FIND Network will not result in any penalty to you or loss of benefit to which you are entitled. Meaning, your choice not to be in the FIND Network will not negatively affect your right to any present or future medical treatment.
What are the risks of being in this study? Is there any way being in this study could be bad for me?
The FIND Network will involve no physical risks. There is a small risk of loss of confidentiality. This is described below in the section 'What happens to the information collected for the research?'
Will it cost me anything to participate in this research study?
Taking part in this research study will not lead to any costs to you.
Will being in this study help me in any way?
The FIND Network offers the benefit of learning about potential research opportunities as well as being connected to updates in research, resources and events through the FIND Network Newsletter. It is expected that the FIND Network will provide general benefit to people with neurodevelopmental conditions by facilitating research, which may in the future improve care.
What happens to the information collected for the research?
Efforts will be made to limit the use and disclosure of your personal information, including research study and medical records, to people who have a need to review this information. We cannot promise complete privacy. Organizations that may inspect and copy your information include the IRB and other representatives of this institution, including those that have responsibilities for monitoring or ensuring compliance.
Records of participation in the FIND Network will be maintained and kept confidential as required by law. Risk of loss of confidentiality will be minimized by storing all data securely as either password-protected, computerized records, or as hard copy records in the offices of the Center for Neurobehavioral Development, safeguarded under lock and key.
Your identity will not be revealed on any report, publication, or at scientific meetings. The University of Minnesota Institutional Review Board (IRB) will have access to your files as they pertain to this research study. The IRB is a special committee that reviews human research to check that the rules and regulations are followed.
To these extents, confidentiality is not absolute.
Who do I contact if I have question, concerns or feedback about my experience?
This research has been reviewed and approved by an Institutional Review Board (IRB) within the Human Research Protections Program (HRPP). To share feedback privately with the HRPP about your research experience, call the Research Participants' Advocate Line at 612-625-1650 or go to https://research.umn.edu/units/hrpp/research-participants/questions-concerns. You are encouraged to contact the HRPP if:
● Your questions, concerns, or complaints are not being answered by the research team.
● You cannot reach the research team.
● You want to talk to someone besides the research team.
● You have questions about your rights as a research participant.
● You want to get information or provide input about this research.
Will I have a chance to provide feedback after the study is over?
The Human Research Protection Program may ask you to complete a survey that asks about your experience as a research participant. You do not have to complete the survey if you do not want to. If you do choose to complete the survey, your responses will be anonymous.
If you are not asked to complete a survey, but you would like to share feedback, please contact the study team or the Human Research Protection Program (HRPP). See the "Researcher Contact Information" of this form for study team contact information and "Who do I contact?" of this form for HRPP contact information.
Will I be compensated for my participation?
There is no compensation for participating in the FIND Network.
I have read the above information and I consent to participate in the FIND Network. Consent [V.9]_29Jul20
* must provide value
Yes
No
The assent form must be read by anyone ages 8 to 17 years old who is enrolling in the Network. A parent/legal guardian can also read this form to children ages 8 to 17. Assent [V.2]_01Dec17
ASSENT FORM
Focus in NeuroDevelopment (FIND) Network:
A statewide network for research in neurodevelopmental disorders
Study Number: 1306M35301
We are asking people with Neurodevelopmental Disorders (including ADHD, autism, OCD, and tic disorders) and their families if they want to be on a list of people interested in being in a research study. The list would have you and your parents' names and a way to contact them on it. It also would have information about you, like your age, whether you are male or female, and about some of your skills. Researchers would use the list to contact your parents and tell them about their study. You and your parents can decide to say yes or no about being in the study. Researchers are only able to see the list if we think their study is OK.
Please ask about anything in this form that you don't understand at any time.
If you agree to be on our list, we would ask to sign this assent form. Your parents will fill out some forms that will ask questions about what kind of research you would like to be contacted about. After the forms are filled out, your information will be put into a computer system that is protected so that only approved people can see it.
If you ever want to take your name off of this list, your parents can contact Dr. Jacob or a member of her team and ask to be taken off the list.
We hope that this list will help researchers learn more about autism and other conditions. If we learn more about these conditions, it may help people and their families get better care.
If you don't want to be on this list, that is OK. You can tell us, and no one will be mad at you.
You can ask any questions now. If you have a question later that you didn't think of now, you can ask us later.
Clicking 'yes' here means that you have read this form or had someone read it to you and are willing to be on the list. If you don't want to be on the list, don't click 'yes'. Remember, no one will be mad at you if you don't click 'yes' or even if you change your mind later.
I have read this form or had someone read it to me and I am willing to be on the list. Assent [V.2]_01Dec17
* must provide value
Yes
No
Today M-D-Y
Child/Relative's first name
* must provide value
Child/Relative's last name
* must provide value
Parent/Guardian's first name
* must provide value
Parent/Guardian's last name
* must provide value
What is your relationship to child/relative
* must provide value
Mother Father Other legal guardian
Please fill out the following questions in regards to your child or relative
First name
* must provide value
Last name
* must provide value
If you are filling out this survey on behalf of an adult 18+, what is your name?
Note: Please complete the rest of the survey questions pertaining to the individual joining the FIND Network
Date of birth for person being enrolled in the FIND Network
Note: Child/relative or yourself if joining as an adult
* must provide value
Gender of the person being enrolled in the FIND Network
Note: Child/relative or yourself if joining as an adult
* must provide value
Female
Male
Other
Alternate contact's first name
Alternate contact's last name
What is the alternate contact's relationship to your child/relative?
What is the alternate contact's relationship to you
What is the address for the person being enrolled in the FIND Network?
* must provide value
State
* must provide value
Zipcode
* must provide value
Preferred Phone Number
* must provide value
Email
* must provide value
2 Do you speak any language other than English at home?
* must provide value
Yes
No
What other language(s) do you speak at home?
* must provide value
4a Do you consider your child/relative Hispanic or Latino?
Yes
No
4b Do you consider yourself Hispanic or Latino?
Yes
No
5a What race do you consider your child/relative to be? (check all that apply)
5b What race do you consider yourself to be? (check all that apply)
Does your child/relative have any siblings?
Yes
No
Do you have any siblings?
Yes
No
Is your child a twin, triplet or set of any other multiple?
Yes
No
Are you a twin, triplet, or set of any other multiple?
Yes
No
8a Has your child/relative ever been diagnosed with autism spectrum disorder?
Examples: Autism, Pervasive Developmental Disorder, Not Otherwise Specified [PDD-NOS], or Asperger Syndrome
* must provide value
Yes
No
8b Have you ever been diagnosed with autism spectrum disorder?
Examples: Autism, Pervasive Developmental Disorder, Not Otherwise Specified [PDD-NOS], or Asperger Syndrome
* must provide value
Yes
No
What is your child/relative's specific autism spectrum diagnosis?
What is your specific autism spectrum disorder diagnosis?
* must provide value
How old was your child/relative when he/she was first diagnosed with autism spectrum disorder?
Please enter age in years. Enter "0" if before the age of 1 year
How old were you when you were first diagnosed with autism spectrum disorder?
Pease enter age in years. Enter "0" if before the age of 1 year
12a Where was your child/relative first diagnosed with autism spectrum disorder (ASD)?
School or Early Childhood program
Specialty clinic for ASD or other developmental disabilities
Medical doctor
Don't know
12b Where were you first diagnosed with autism spectrum disorder (ASD)?
School or Early Childhood program
Specialty clinic for ASD or other developmental disabilities
Medical doctor
Don't know
16a Please describe your child/relative's language:
* must provide value
Nonverbal (says less than 5 words)
Speaks mostly using single words
Speaks mostly in phrases
Speaks mostly in full sentences
16b Please describe your language:
* must provide value
Nonverbal (say less than 5 words)
Speak mostly using single words
Speak mostly in phrases
Speak mostly in full sentences
Does your child/relatives have tics (quick repeat motor movements or sounds)?
* must provide value
Yes
No
Do you have tics (quick, repeated motor movements or vocal sounds)?
Yes
No
What type of tics has your child had? Include tics they have now and tics they've had in the past.
Motor or movement tics only (examples: eye blinking, nose scrunching, head rolling)
Vocal or sound tics only (examples: sniffing, throat clearing, grunting)
Both motor and vocal tics
What type of tics have you had? Include tics they have now and tics they've had in the past.
Motor or movement tics only (examples: eye blinking, nose scrunching, head rolling)
Vocal or sound tics only (examples: sniffing, throat clearing, grunting)
Both motor and vocal tics
How long has your child/relative had tics?
less than one year
more than one year
How long have you had tics?
Less than one year
More than one year
Has your child/relative ever been diagnosed with a tic disorder? Examples: Tourette Syndrome, Transient Tic Disorder
Yes
No
An evaluation is in progress
Have you ever been diagnosed with a tic disorder? Examples: Tourette Syndrome, Transient Tic Disorder
Yes
No
An evaluation is in progress
What is your child/relative's specific tic disorder diagnosis?
Tourette Syndrome or Tourette Disorder
Chronic/Pervasive Motor Tic Disorder
Chronic/Pervasive Vocal Tic Disorder
Transient/Provisional Tic Disorder
Other
What is your specific tic disorder diagnosis?
Tourette Syndrome or Tourette Disorder Chronic/Pervasive Motor Tic Disorder
Chronic/Pervasive Vocal Tic Disorder
Transient/Provisional Tic Disorder
Other
Where was your child/relative diagnosed with a tic disorder? (check all that apply)
Where were you diagnosed with a tic disorder? (check all that apply)
Check any of the following treatments your child has had for tics
Check any of the following treatments you have had for tics:
Has your child/relative ever been diagnosed with a disorder related to inattention and/or hyperactivity? Example: Attention Deficit Hyperactivity Disorder (ADHD)
Yes
No
Evaluation in progress
Have you ever been diagnosed with a disorder related to inattention and/or hyperactivity? Example: Attention Deficit Hyperactivity Disorder (ADHD)
Yes
No
Evaluation in progress
What is your child/relative's specific diagnosis?
Attention Deficit Hyperactivity Disorder, Inattentive Type
Attention Deficit Hyperactivity Disorder, Hyperactive Type
Attention Deficit Hyperactivity Disorder, Combined Type
Attention Deficit Disorder
What is your specific diagnosis?
Attention Deficit Hyperactivity Disorder, Inattentive Type
Attention Deficit Hyperactivity Disorder, Hyperactive Type
Attention Deficit Hyperactivity Disorder, Combined Type
Attention Deficit Disorder
Where was your child/relative diagnosed with this disorder? (check all that apply)
Where were you diagnosed with this disorder? (check all that apply)
Check any of the following treatments your child has had for ADHD/ADD:
Check any of the following treatments you have had for ADHD/ADD
Has your child/relative ever been diagnosed with obsessive-compulsive disorder (OCD)?
Yes
No
An evaluation is in progress
Have you ever been diagnosed with obsessive-compulsive disorder (OCD)?
Yes
No
Evaluation in progress
What types of obsessions has your child/relative had? (check all that apply)
What types of obsessions have you had? (check all that apply)
What types of compulsions or rituals has your child/relative had? (check all that apply)
What types of compulsions or rituals have you had? (check all that apply)
Check any of the following treatments your child has had for OCD
Check any of the following treatments you have had for OCD
9a Does your child or relative have any of the following diagnoses? (Check all that apply)
* must provide value
9b Do you have any of the following diagnoses? (Check all that apply)
* must provide value
Has your child/relative ever been given any medical diagnosis?
Example: congenital heart defect, genetic disorder, chromosomal abnormality, diabetes, etc.
* must provide value
Yes
No
Have you ever been given any medical diagnosis?
Example: congenital heart defect, genetic disorder, diabetes, chromosomal abnormality, etc.
* must provide value
Yes
No
Please list all diagnoses
* must provide value
7a Of all the diagnoses you have listed above, which diagnosis most affects day to day functioning?
19 Please let us know types of studies the person signing up for the FIND Network would NOT like to be contacted about. (Leave studies you would like to be contacted about blank/unchecked)
What is your job title? (educator, clinician, researcher, etc.)
What organization do you work for?
Would you be interested in sharing information about studies being conducted at the University of Minnesota?
Yes
No
Would you be interested in having someone come to your organization and share information about research or other topics related to autism?
Yes
No
Would you like information about events and conferences happening in our region from us or any of our partners?
Yes
No
20 Would you like to receive newsletters containing information regarding research, educational opportunities, resources, and events?
Note: newsletters are typically sent out quarterly
* must provide value
Yes
No
1 How did you hear about the FIND Network?