Consent Form for Language Research Registry

Please read through this carefully. We are happy to answer any questions you may have!

Who are you enrolling in the registry? (note you can enroll multiple individuals, but you must complete a consent form and survey for each person separately).

* must provide value

If you are enrolling a participant who completed a paper consent form, scan it and upload it here. If you are enrolling online, you answered the previous question incorrectly.

* must provide value

Upload file

If you are enrolling a child participant who completed a paper *assent* form, scan it and upload it here. If you are enrolling your child online, you answered the previous question incorrectly.

Upload file

Please enter the date when the paper consent form was SIGNED by the participant/parent:

* must provide value

M-D-Y

*UPDATE ALLOCATION INFO*

Go to the Current Allocation & Study Participation History form and make sure it is up to date.

Children aged 13 - 17 will be asked to provide assent - their own decision on participation in this study. After you have filled out the consent information, your child will be asked to read information about the study and decide if he/she wants to participate.

CONSENT TO PARTICIPATE IN RESEARCH

Title of Project: Language Research Registry

Principal Investigator(s): Amanda Owen Van Horne, PhD CCC-SLP

KEY INFORMATION

Important aspects of the project you should know about first:

Purpose: The purpose of this project is to create a registry of potential research participants. This includes children and adults, both with and without suspected language impairments.
Procedures: If you choose to participate, you will be asked to complete a survey with basic information about you and your child(ren).
Duration: This will take about 5-10 minutes.
Risks: The main risk or discomfort is that you may worry about others finding out your child(ren) has been enrolled in a research registry. Another risk is that the confidentiality of your data could be compromised. We will do our best to protect you and your child(ren)'s privacy throughout the life of the registry.
Benefits: The main benefit to you is that enrolling in the registry could make it easier for you to learn about and participate in research studies that interest you.
Alternatives: The alternative is that you may choose not to enroll in this registry.
Costs and Compensation:If you decide to participate there will be no additional cost to you. You and your child will not be compensated for enrolling in the registry.
Participation: Taking part or not in this research registry is your decision. You can decide to participate and then change your mind at any point.

Please carefully read the entire document. You can ask any questions you may have before deciding If you want to participate.

You are being invited to participate in a research registry. This consent form tells you about the registry including its purpose, what you will be asked to do if you decide to take part, and the risks and benefits of being in the registry. Please read the information below and ask us any questions you may have before you decide whether or not you want to participate.

PURPOSE OF THE PROJECT

The purpose of this project is to create a registry of potential research participants. This includes children and adults, both with and without suspected language impairments. We may also look back at registry data in the future to learn more about language and cognition in children and adults.

WHO IS BEING ASKED TO PARTICIPATE?

Your child(ren) will be one of approximately 3000 participants in this registry. You are being asked to enroll in the registry because you may be interested in having your child(ren) participate in future research studies with our labs.

PROCEDURES: WHAT WILL YOU BE ASKED TO DO?

You will be asked to complete a survey form with basic information about you and your child, including:

Contact information
Background information about you, such as your occupation and education
Background information about your child, such as gender, race, and date of birth
Information about the language(s) your child hears
Any suspected or diagnosed disabilities

You may complete the survey on paper or online. You may skip any survey question(s) you do not wish to answer.

You can choose which data will be included in the registry. You may contact us at any time to request that some or all of your information be removed from the registry, without giving a reason. Registry data may exist in perpetuity if you do not ask for it to be removed.

If your child(ren) completes additional testing with us as part of other research studies, we will ask you at that time if we can add their test scores to the registry. This will help us to better match your child(ren) with studies in the future. If you do not want us to add any test scores, you may ask us to leave this data out of the registry.

If a new opportunity for you and your child(ren) to participate in one of our studies comes up, we may contact you using the information in the registry. You are free to say yes or no to having you or your child(ren) participate in any studies we ask you about.

WHAT ARE POSSIBLE RISKS AND DISCOMFORTS?

The main risk or discomfort is that you may worry about others finding out your child(ren) has been enrolled in a research registry. Another risk is that the confidentiality of your data could be compromised. We will do our best to protect you and your child(ren)'s privacy throughout the life of the registry. All of your information will be stored on encrypted, password-protected servers. Nothing will be shared outside of the registry-affiliated labs at UD.

WHAT ARE POTENTIAL BENEFITS FROM THE REGISTRY?

The main benefit to you is that enrolling in the registry could make it easier for you to learn about and participate in research studies that interest you. This registry may also help others in the future by making it easier for researchers to find participants for their studies. Future research could contribute to a better understanding of people with and without language impairments.

CONFIDENTIALITY: WHO MAY KNOW THAT YOU PARTICIPATED IN THIS RESEARCH?

We will keep your registry data as confidential as possible, with the exception of certain information that we must report for legal or ethical reasons. Examples include child abuse or intent to hurt yourself or others. If required, your records may be inspected by authorized personnel in the University of Delaware Institutional Review Board. This is to ensure compliance with university and governmental policies. We also must let you know that if during your participation in this registry our research team was to observe or suspect, in good faith, child abuse or neglect, we are required by Delaware state law to file a report to the appropriate officials.

All of your information will be stored in an encrypted, password-protected online database. We will keep hard copies of consent forms and surveys for as long as required, then they will be shredded.

We will only include information in the registry that researchers need to use it effectively. Only current members of our research team will have access to the registry. If results of this project are published or presented, individual names and other personally identifiable information will not be used.

By agreeing to participate in this registry, you understand that any qualified researcher at UD may be given access to the registry at a later date. Faculty members in charge of UD labs may apply for registry access on a project-by-project basis. They must first agree to follow procedures that ensure the integrity and confidentiality of your data. The faculty member then nominates individuals to enter data into the registry, contact potential research participants, and carry out registry searches. These individuals may be undergraduate students, graduate students, or staff. Before they can access registry data, they must first complete training in research ethics and proper registry use. They must also sign a confidentiality agreement. Each lab member will only have access to the data needed for their job, not the entire registry.

If you want any personal information to be left out of the registry, we will do so. You may contact us at any time to request that some or all of your information be removed from the registry, without giving a reason.

USE OF DATA COLLECTED FROM YOU IN FUTURE RESEARCH

Identifiers about you and your child(ren) might be removed from registry data and after such removal, the data could be used for future research studies or distributed to another investigator for future research studies without additional informed consent from you or your legally authorized representative.

COSTS AND COMPENSATION

There are no costs to you for enrolling your child(ren) in this registry. You and your child(ren) will not receive any compensation for enrollment.

DO YOU HAVE TO TAKE PART IN THIS REGISTRY?

Taking part in this research registry is your decision. You do not have to enroll your child(ren) in this registry. If you choose to enroll your child(ren), you have the right to change your mind at any time. If you decide later to have your information removed from the registry, there will be no penalty or loss of benefits to which you are otherwise entitled. Your decision to stop participation, or not to participate, will not influence current or future relationships with the University of Delaware.

INSTITUTIONAL REVIEW BOARD

This research registry has been reviewed and approved by the University of Delaware Institutional Review Board (UD IRB), which is a committee formally designated to approve, monitor, and review biomedical and behavioral research involving humans. If you have any questions or concerns about your rights as a research participant, you may contact the UD IRB at hsrb-research@udel.edu or (302) 831-2137.

CONTACT INFORMATION

If you have any questions about the purpose, procedures, or any other issues related to this research registry you may contact the Principal Investigator, Dr. Amanda Owen Van Horne at ajovh@udel.edu or (302) 831-3982.

CONSENT TO PARTICIPATE IN RESEARCH

Title of Project: Language Research Registry

Principal Investigator(s): Amanda Owen Van Horne, PhD CCC-SLP

KEY INFORMATION

Important aspects of the project you should know about first:

Purpose: The purpose of this project is to create a registry of potential research participants. This includes children and adults, both with and without suspected language impairments.
Procedures: If you choose to participate, you will be asked to complete a survey with basic information about you.
Duration: This will take about 5-10 minutes.
Risks: The main risk or discomfort is that you may worry about others finding out you have enrolled in a research registry. Another risk is that the confidentiality of your data could be compromised. We will do our best to protect your privacy throughout the life of the registry.
Benefits: The main benefit to you is that enrolling in the registry could make it easier for you to learn about and participate in research studies that interest you.
Alternatives: The alternative is that you may choose not to enroll in this registry.
Costs and Compensation:If you decide to participate there will be no additional cost to you. You will not be compensated for enrolling in the registry.
Participation: Taking part or not in this research registry is your decision. You can decide to participate and then change your mind at any point.

Please carefully read the entire document. You can ask any questions you may have before deciding If you want to participate.

PURPOSE OF THE PROJECT

WHO IS BEING ASKED TO PARTICIPATE?

You will be one of approximately 3000 participants in this registry. You are being asked to enroll in the registry because you may be interested in participating in future research studies with our labs.

PROCEDURES: WHAT WILL YOU BE ASKED TO DO?

You will be asked to complete a survey form with basic information about you, including:

Contact information
Background information about you, such as your occupation, education, gender, race, and date of birth
Information about the language(s) you know
Any suspected or diagnosed disabilities

You may complete the survey on paper or online. You may skip any survey question(s) you do not wish to answer.

You can choose which information will be included in the registry. You may contact us at any time to request that some or all of your data be removed from the registry, without giving a reason. Registry data may exist in perpetuity if you do not ask for it to be removed.

If you complete additional testing with us as part of other research studies, we will ask you at that time if we can add your test scores to the registry. This will help us to better match you with studies in the future. If you do not want us to add any test scores, you may ask us to leave this data out of the registry.

If a new opportunity for you to participate in one of our studies comes up, we may contact you using the information in the registry. You are free to say yes or no to participating in any studies we ask you about.

WHAT ARE POSSIBLE RISKS AND DISCOMFORTS?

The main risk or discomfort is that you may worry about others finding out you have enrolled in a research registry. Another risk is that the confidentiality of your data could be compromised. We will do our best to protect your privacy throughout the life of the registry. All of your information will be stored on encrypted, password-protected servers. Nothing will be shared outside of the registry-affiliated labs at UD.

WHAT ARE POTENTIAL BENEFITS FROM THE REGISTRY?

CONFIDENTIALITY: WHO MAY KNOW THAT YOU PARTICIPATED IN THIS RESEARCH?

All of your information will be stored in an encrypted, password-protected online database. We will keep hard copies of consent forms and surveys for as long as required, then they will be shredded.

USE OF DATA COLLECTED FROM YOU IN FUTURE RESEARCH

Identifiers about you might be removed from registry data and after such removal, the data could be used for future research studies or distributed to another investigator for future research studies without additional informed consent from you or your legally authorized representative.

COSTS AND COMPENSATION

There are no costs to you for enrolling in this registry. You and your child(ren) will not receive any compensation for enrollment.

DO YOU HAVE TO TAKE PART IN THIS REGISTRY?

Taking part in this research registry is your decision. You do not have to enroll yourself in this registry. If you choose to enroll, you have the right to change your mind at any time. If you decide later to have your information removed from the registry, there will be no penalty or loss of benefits to which you are otherwise entitled. Your decision to stop participation, or not to participate, will not influence current or future relationships with the University of Delaware.

INSTITUTIONAL REVIEW BOARD

CONTACT INFORMATION

Please enter the full name of the child you wish to enroll in the registry:

* must provide value

Please type your full name:

* must provide value

Please enter today's date (M-D-Y)

* must provide value

M-D-Y

Please sign with a mouse or your finger.

Your signature on this form means that: 1) you are at least 18 years old; 2) you have read and understand the information given in this form; 3) you have asked any questions you have about the research and the questions have been answered to your satisfaction; and 4) you accept the terms in the form and volunteer to participate in the study. You will be emailed a copy of this form to keep if you include your email below.

* must provide value

Add signature

Please sign with a mouse or your finger.

Your signature below means that you are making a decision whether or not to have your child participate in this study. Your signature indicates that you have read the information provided above and decided to allow your child to participate. Only a parent or guardian may sign on behalf of their child.

* must provide value

Add signature

Please provide your email address.

* must provide value

The next section of this form is an assent form - for children aged 13 - 17 to decide if they want to participate in the study.

ASSENT TO PARTICIPATE IN RESEARCH

Title of Study: Language Research Registry

Principal Investigator(s): Amanda Owen Van Horne, PhD CCC-SLP

I am asking if you want to be part of a research registry. This form tells you what the registry is for, what you will be asked to do if you want to be in the registry, and the possible bad and good things about this registry.

WHAT IS THIS RESEARCH ABOUT ?

The purpose of this project is to keep a list of people who might want to be in a research study. This list will help us find people interested in participating in studies in the future. We might also use this list to learn more about how people learn and use language by looking at the information we have collected in the future.

We are asking you to be in the registry because you might like to participate in future research studies.

WHAT WILL YOU BE ASKED TO DO?

If you want to participate, we will ask you to let us keep some information about you like your name, address, and phone number, whether you are a boy or a girl, and how old you are. This lets us contact your parent(s) about studies that you could do and NOT contact you about studies you can't do. We will keep this information forever unless you tell us to delete it or get rid of it. Every time we call your parent(s), you can decide if we can keep some of your information, but not call you about studies, or if we should get rid of all of your information.

WHAT ARE THE POSSIBLE BAD THINGS ABOUT THIS PROJECT?

A few things about this project could make you uncomfortable. People might find out information about you or that you are in our list of people who might like to be in a study. We will do our best to keep your information private and confidential so no one else can find out about you.

WHAT ARE THE POSSIBLE GOOD THINGS ABOUT IT?

Being in the registry could make it easier for you to learn about and participate in research studies that interest you. This registry may also help others in the future by making it easier for researchers to find participants for their studies. Future research could help us learn more about people with and without language impairments.

WHO WILL KNOW THAT YOU PARTICIPATED IN THIS REGISTRY?

No one other that the researchers and your parent(s) will know that you are in this registry. If we tell other people about the research we will not use your name.

WILL YOU GET ANYTHING FOR PARTICIPATING?

You will not get any money for sharing your information with us.

YOU CAN CHANGE YOUR MIND ABOUT BEING IN THE REGISTRY

You do not have to say yes. Taking part in this registry is your decision. If you choose to take part, you can change your mind at any time. If you decide later that you don't want be in the registry, nothing bad will happen to you and no one will be upset with you. If, at any time, you decide to stop participating in the registry, please let us know by telling one of the researchers.

INSTITUTIONAL REVIEW BOARD

This research registry has been reviewed and approved by the University of Delaware Institutional Review Board (UD IRB). If you have any questions or concerns about your rights as a research participant, you may contact the UD IRB at hsrb-research@udel.edu or (302) 831-2137.

CONTACT INFORMATION If you have any questions about the purpose, procedures, or any other issues related to this research registry you may contact the Principal Investigator, Dr. Amanda Owen Van Horne at ajovh@udel.edu or (302) 831-3982.

Please type your full name.

* must provide value

Please enter today's date (M-D-Y)

* must provide value

M-D-Y

Please sign with a mouse or your finger.

Your signature on this form means that: 1) you are between 13 - 17 years old; 2) you have read and understand the information given in this form; 3) you have asked any questions you have about the research and the questions have been answered to your satisfaction; and 4) you accept the terms in the form and volunteer to participate in the study. Your parent will be emailed a copy of this form to keep if he/she included an email in the contact box above.

* must provide value

Add signature

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