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University of Iowa LCA Registry

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We would like to invite you to join a registry of individuals with Leber Congenital Amaurosis (LCA). The purpose of the registry to collect contact information from individuals with LCA so that we may send information about new developments in genetic testing and research study opportunities.

We are inviting individuals with LCA who visit our website to join our registry. Approximately 3,000 people will be invited to join this LCA registry at the University of Iowa.

If you agree to participate, we would like you to ask you to provide contact information like your email address, phone number, or postal address. We would also like to ask you some questions about your vision. You are free to not answer any questions that you prefer not to answer.

We may contact you in the future by your preferred method to provide you with new information about LCA genetic testing and research study opportunities. We will provide new information as it becomes available, so we may contact you several times.

If you don't wish to join the registry, you may leave this website now or at anytime before submitting your information.

We will keep the information you provide confidential, however federal regulatory agencies and the University of Iowa Institutional Review Board (a committee that reviews and approves research studies) may inspect and copy records pertaining to this research. If we write a report about this registry we will do so in such a way that you cannot be identified.

There are no known risks from being in this registry, and you may not benefit personally. However we hope that others will benefit in the future from what we learn as a result of creating this registry.

  • You will not have any costs for enrolling in the registry.
  • You will not be paid for enrolling in the registry.

Taking part in this registry is completely voluntary. If you decide not to be in this registry, or if you stop participating at any time, you won't be penalized or lose any benefits for which you otherwise qualify.

 

If you have any questions about the registry, please contact us at 866-495-2873 (866-495-CURE). If you have questions about the rights of research subjects, please contact the Human Subjects Office, 105 Hardin Library for the Health Sciences, 600 Newton Rd., The University of Iowa, Iowa City, IA 52242-1098, (319)335-6564, or e-mail irb@uiowa.edu. To offer input about your experiences as a registry member or to speak to someone other than the research staff, call the Human Subjects Office at the number above.

Submitting contact information and answers to questions about your vision on the following web pages will indicate your willingness to enroll in the LCA registry.

Thank you very much for your consideration.

Sincerely,

Edwin M. Stone, M.D., Ph.D.
Professor of Ophthalmology
Carver College of Medicine
University of Iowa

John H. Fingert, M.D., Ph.D.
Assistant Professor of Ophthalmology
Carver College of Medicine
University of Iowa

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There is another eye condition named after Dr. Leber in which the optic nerve is affected, which is called Leber Hereditary Optic Neuropathy or LHON. Do you think you may have Leber Hereditary Optic Neuropathy (LHON) instead of Leber Congenital Amaurosis (LCA)?
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Retrieved Sat, 2018-12-15 17:55
Last modified Thu, 03/29/2012 - 16:08
www.carverlab.org/project3000/registry