Frequently Asked Questions (FAQ)

Who is being asked to participate in the Dyslexia Research Registry?

Families who have children with dyslexia are being asked to participate in the Dyslexia Research Registry. In particular, children who have severe difficulty in reading with otherwise normal abilities are invited to join the registry.

How can I help inform children and their families about the Dyslexia Research Registry?

Classroom teachers, ESE teachers, resource teachers, psychologists and physicians are invited to refer children to the Dyslexia Research Registry. Print the Brochure or Contact Us to be sent copies for distribution. Families will then contact the Dyslexia Research Registry directly if they wish to participate.

Educators are also invited to administer a brief reading assessment to children in their area who wish to join the registry. To learn more about the assessment and how you can help: Contact Us at the Dyslexia Research Registry.

What will my participation in the Dyslexia Research Registry involve?

If you wish to participate in the Dyslexia Research Registry, you will be asked to complete the Dyslexia Research Registry application and sign the Letter of Informed Consent. Your child will be asked to partake in a reading assessment to collect base-line data on current reading skills. Assessments will usually take place at your child's school. You will also be asked to give permission to access assessment data already collected about your child including school records. This information will permit research studies to be conducted on the collected data within the registry.

You are being asked to allow us to contact you if one of our researchers determines, through review of your collected information contained in the Dyslexia Research Registry, that you are eligible for participation in a future research study directed at the National Institutes of Health Learning Disabilities Center. Please note that if you qualify for any future research studies, you will be asked to sign a separate consent form that outlines in detail the nature of this research study, including its potential risks and benefits.

In addition, you will be contacted annually to update your contact information. We ask that if changes are made in your telephone number, home address or e-mail that you send these changes to the Dyslexia Research Registry as soon as possible at Contact Us.

What are the possible risks of my participation in the Dyslexia Research Registry?

There are no risks of physical injury associated with your participation in the Dyslexia Research Registry.

What are the possible benefits of my participation in the Dyslexia Research Registry?

One possible direct benefit of your participation in the Dyslexia Research Registry is that you may gain information about:
Dyslexia/Reading Disabilities,
Accommodations for Dyslexia/Reading Disabilities,
Assistive Technology,
Learning Strategies,
Social and Emotional Issues,
Tips for working with schools and teachers,
Tips for home life, or
Americans with Disabilities Act (ADA) rights and advocacy
through this website/document and references to other resources.

An indirect benefit will be that the educational information contained in the Dyslexia Research Registry will be used for research studies directed at improving our knowledge and treatment of dyslexia disabilities and this knowledge my benefit students with dyslexia in the future.

Will I be paid for my participation in the Dyslexia Research Registry?

No, you will not receive any payment for participating in the Dyslexia Research Registry. Future research studies, should you choose to participate in them, may offer compensation for participation.

There are no fees for joining the Dyslexia Research Registry.

Who will know about my participation in the Dyslexia Research Registry?

Any information you provide will be kept confidential to the full extent allowed be Florida Law. In addition, you will not be identified by name in any publication of the results of research studies involving the use of your educational record information unless you sign a separate consent form (release) giving your permission. We will not provide your information to any organization or company for commercial purposes.

Who will have access to my identifiable educational record information contained in the Dyslexia Research Registry?

Access to your identifiable educational record information contained within the Dyslexia Research Registry will be limited to investigators associated with the National Institutes of Health Learning Disabilities Centers and their research staffs. A current, complete listing of these individuals will be provided to you upon your request.

In addition, the following individuals may have access to your identifiable educational record information contained within the Dyslexia Research Registry:

Authorized representatives of FSU Research Conduct and Compliance Office may review information contained within the Dyslexia Research Registry to ensure that the Dyslexia Research Registry adequately protects your privacy.

In unusual cases, the researchers may be required to release your identifiable educational record information in response to an order from a court of law.

For how long will my educational record information continue to be used for research purposes?

Your child's educational record information contained within the Dyslexia Research Registry will be used for research purposes for an indefinite period of time; or 2) until you withdraw your permission for participation in the Dyslexia Research Registry.

Is my participation in the Dyslexia Research Registry voluntary?

Your participation in the Dyslexia Research Registry is completely voluntary.

May I withdraw, at a future date, my consent for participation in the Dyslexia Research Registry?

You may withdraw, at any time, your consent for participation in the Dyslexia Research Registry. However, any research use of your child's educational record research information prior to the date that you formally withdraw your permission will not be destroyed.

To formally withdraw your permission for participation in the Dyslexia Research Registry you should provide a written and dated notice of this decision to the principal investigator of the Dyslexia Research Registry at How to Join.




	Home Benefits of Participation How to Join For Educators and Professionals Assessments For Parents Resources Frequently Asked Questions Learning Disability Centers FCRR Sharepoint Contact Us A Florida State University Center			Frequently Asked Questions (FAQ) Who is being asked to participate in the Dyslexia Research Registry? Families who have children with dyslexia are being asked to participate in the Dyslexia Research Registry. In particular, children who have severe difficulty in reading with otherwise normal abilities are invited to join the registry. How can I help inform children and their families about the Dyslexia Research Registry? Classroom teachers, ESE teachers, resource teachers, psychologists and physicians are invited to refer children to the Dyslexia Research Registry. Print the Brochure or Contact Us to be sent copies for distribution. Families will then contact the Dyslexia Research Registry directly if they wish to participate. Educators are also invited to administer a brief reading assessment to children in their area who wish to join the registry. To learn more about the assessment and how you can help: Contact Us at the Dyslexia Research Registry. What will my participation in the Dyslexia Research Registry involve? If you wish to participate in the Dyslexia Research Registry, you will be asked to complete the Dyslexia Research Registry application and sign the Letter of Informed Consent. Your child will be asked to partake in a reading assessment to collect base-line data on current reading skills. Assessments will usually take place at your child's school. You will also be asked to give permission to access assessment data already collected about your child including school records. This information will permit research studies to be conducted on the collected data within the registry. You are being asked to allow us to contact you if one of our researchers determines, through review of your collected information contained in the Dyslexia Research Registry, that you are eligible for participation in a future research study directed at the National Institutes of Health Learning Disabilities Center. Please note that if you qualify for any future research studies, you will be asked to sign a separate consent form that outlines in detail the nature of this research study, including its potential risks and benefits. In addition, you will be contacted annually to update your contact information. We ask that if changes are made in your telephone number, home address or e-mail that you send these changes to the Dyslexia Research Registry as soon as possible at Contact Us. What are the possible risks of my participation in the Dyslexia Research Registry? There are no risks of physical injury associated with your participation in the Dyslexia Research Registry. What are the possible benefits of my participation in the Dyslexia Research Registry? One possible direct benefit of your participation in the Dyslexia Research Registry is that you may gain information about: Dyslexia/Reading Disabilities, Accommodations for Dyslexia/Reading Disabilities, Assistive Technology, Learning Strategies, Social and Emotional Issues, Tips for working with schools and teachers, Tips for home life, or Americans with Disabilities Act (ADA) rights and advocacy through this website/document and references to other resources. An indirect benefit will be that the educational information contained in the Dyslexia Research Registry will be used for research studies directed at improving our knowledge and treatment of dyslexia disabilities and this knowledge my benefit students with dyslexia in the future. Will I be paid for my participation in the Dyslexia Research Registry? No, you will not receive any payment for participating in the Dyslexia Research Registry. Future research studies, should you choose to participate in them, may offer compensation for participation. There are no fees for joining the Dyslexia Research Registry. Who will know about my participation in the Dyslexia Research Registry? Any information you provide will be kept confidential to the full extent allowed be Florida Law. In addition, you will not be identified by name in any publication of the results of research studies involving the use of your educational record information unless you sign a separate consent form (release) giving your permission. We will not provide your information to any organization or company for commercial purposes. Who will have access to my identifiable educational record information contained in the Dyslexia Research Registry? Access to your identifiable educational record information contained within the Dyslexia Research Registry will be limited to investigators associated with the National Institutes of Health Learning Disabilities Centers and their research staffs. A current, complete listing of these individuals will be provided to you upon your request. In addition, the following individuals may have access to your identifiable educational record information contained within the Dyslexia Research Registry: Authorized representatives of FSU Research Conduct and Compliance Office may review information contained within the Dyslexia Research Registry to ensure that the Dyslexia Research Registry adequately protects your privacy. In unusual cases, the researchers may be required to release your identifiable educational record information in response to an order from a court of law. For how long will my educational record information continue to be used for research purposes? Your child's educational record information contained within the Dyslexia Research Registry will be used for research purposes for an indefinite period of time; or 2) until you withdraw your permission for participation in the Dyslexia Research Registry. Is my participation in the Dyslexia Research Registry voluntary? Your participation in the Dyslexia Research Registry is completely voluntary. May I withdraw, at a future date, my consent for participation in the Dyslexia Research Registry? You may withdraw, at any time, your consent for participation in the Dyslexia Research Registry. However, any research use of your child's educational record research information prior to the date that you formally withdraw your permission will not be destroyed. To formally withdraw your permission for participation in the Dyslexia Research Registry you should provide a written and dated notice of this decision to the principal investigator of the Dyslexia Research Registry at How to Join.