Frequently Asked Questions (FAQ)
Who can join the Reading Research Registry?
Families with a child or multiple children who demonstrate difficulty in reading are invited to join the Reading Research Registry.
What will my participation in the Reading Research Registry Involve?
If you wish to participate in the Reading Research Registry, you will be asked to complete an application and sign a Letter of Informed Consent. In order to screen participants for various studies, you may be asked to give permission to access assessment data already collected about your child, including school records. If necessary assessment data is unavailable, we may request that your child take a reading assessment with a local educator or professional to collect baseline data on current reading skills. All of this information will permit research studies to be conducted on the collected data within the registry.
By joining the registry, you are being asked to allow us to contact you if one of our researchers determines that you are eligible for participation in a future research study. 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.
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 email that you send these changes to the Reading Research Registry as soon as possible by contacting us.
Is my participation in the Reading Research Registry voluntary?
Your participation in the Reading Research Registry is completely voluntary.
What are the possible benefits of my participation in the Reading Research Registry?
A direct benefit of your participation in the Reading Research Registry is that you may gain information about:
- Learning Disabilities associated with reading,
- Accommodations for individuals with a learning disability specific to reading,
- Assistive Technology,
- Learning Strategies,
- Social and Emotional Issues,
- Tips for working with schools and teachers, and/or
- Tips for home life
An indirect benefit will be that the educational information contained in the Reading Research Registry will be used for research studies directed at improving our knowledge of reading. This knowledge may, in turn, benefit future individuals who struggle with reading by providing understanding of and intervention methods for problems associated with reading.
What are the possible risks of my participation in the Reading Research Registry?
There are no risks of physical injury associated with your participation in the Reading Research Registry.
Who will know about my participation in the Reading Research Registry?
Any information you provide will be kept confidential to the full extent allowed by 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 Reading Research Registry?
Access to your identifiable education record information contained in the Reading Research Registry will be limited to investigators associated with the National Institutes of Health Learning Disabilities Centers and their research staff. 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 Reading Research Registry:
Authorized representatives of the FSU Research Conduct and Compliance Office may review information contained in the Reading Research Registry to ensure that the Reading 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 Reading Research Registry will be used for research purposes for 1) an indefinite period of time; or 2) until you withdraw your permission for participation in the Reading Research Registry.
May I withdraw, at a future date, my consent for participation in the Reading Research Registry?
You may withdraw, at anytime, your consent for participation in the Reading Research Registry. However, any research use of your child's educational record prior to the date that you formally withdraw your permission will not be destroyed.
To formally withdraw your permission for participation in the Reading Research Registry, you should provide a written and dated notice of this decision to the principal investigator of the Reading Research Registry.
How can I help inform children and their families about the Reading Research Registry?
Classroom teachers, ESE teachers, resource teachers, psychologists, speech pathologists, and physicians are invited to refer children to the Reading Research Registry. Print the brochure or contact us for copies to distribute.
Educators and professionals are also invited to join the registry. Should any families require additional assessments, you may be contacted as an area professional to administer the assessment. To learn more about the assessment and how you can help, please contact us at the Reading Research Registry.
I lost my forms for joining the registry. How can I get new forms?
Under the “How to Join” page, there is a link that says “Download Forms to Join” at the bottom of the page. This will take you to a page where you can download the necessary forms to join the registry.