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The purpose of this study is to find and identify all the genes that cause FEVR. When we learn more about what causes FEVR, we will understand how to treat it better and find a cure. If you have been diagnosed with FEVR, please contact:
Jenn Harmon, Genetic Research Coordinator
Moran Eye Center, University of Utah
65 Medical Drive
Room 6620-C
Salt Lake City , Utah 84112
Office: (801)585-1297
Toll Free: 1-800-824-2073 ext. 5-1297
Fax: (801)587-7686
Email: jennifer.harmon@hsc.utah.edu
She will provide you with information regarding your donation of a DNA sample. There is no cost to you for participation. Your participation in this research is very important. Please contact us at your earliest convenience.
This study is strictly for the purpose of medical research. You will not be financially compensated for your participation. Please submit samples after you have a complete discussion with your health care provider and understand the procedure. This site does not give the level of informed consent that your health care provider can give. A list of physicians that are coordinating their efforts and will provide clinical information and collect samples is available on the Find a Doctor link, if your health care provider is not listed and is willing, you can submit samples.
Thank you for your help with this study. We appreciate your time and efforts in benefiting patients with FEVR. Please follow the directions below when submitting a sample. After you have obtained the sample, please contact Jenn Baird for further mailing instructions:
Jenn Harmon, Genetic Research Coordinator
Moran Eye Center, University of Utah
65 Medical Drive
Room 6620-C
Salt Lake City , Utah 84112
Office: (801)585-1297
Toll Free: 1-800-824-2073 ext. 5-1297
Fax: (801)587-7686
Email: jennifer.harmon@hsc.utah.edu
Thank you for making a difference.
Enrollment, consent and assent forms are available for download in PDF format. These documents may be viewed with Adobe Acrobat Reader. To download this free program, please click here.
- One(1) consent form is to be signed by each subject, if the patient is a minor (under age 18), a parent or guardian should sign the minor consent form. If the minor is old enough to understand the procedure an assent form also needs to be signed. Essentially these forms state that the subject is participating willingly, that you have described to them what you plan to do with the samples, and that their participation will be processed confidentially and at no cost. Please have the subject read and sign the consent form prior to having their blood drawn and ask if they have any questions.
- Complete an enrollment form for each subject. Please include subject's name, phone number, birth date, father and mother's name (maiden) and birth dates. If a doctor examines the subject's eyes, please have the doctor check the area in the eye diseases box so we know the correct diagnosis. Please draw a pedigree if the disease is believed to run in the family. Leave the rest of the form blank.
You may download the required forms in PDF format here by clicking on the appropriate link:
Adult consent form
Minor consent form
Minor assent form
Enrollment form
- Draw three(3) 8.5 ml yellow top (ACD solution A) tubes of blood for each adult subject. Please label the tubes immediately with the subject's name and birth date. Labeling the tubes immediately prevents errors and mixing up samples. For children please adjust the volume of blood drawn by their weight using the following formula: 1ml/kilo weight (2.2 lbs. = 1 kilo) example on a 65 lb. child:
65 lb. ÷ 2.2 = 29.5ml of blood could be drawn, or three tubes.
- Keep the blood specimens at ROOM TEMPERATURE.
- Pack the labeled samples in Styrofoam, tape the Styrofoam closed, include consent forms, enrollment forms, and any pedigrees drawn in a box with the Styrofoam. Please ship to the address below via FedEx standard overnight, preferably the same day blood is drawn, using the account number obtained from Jenn Baird. You may reach FedEx at 1-800-463-3339 or by visiting the FedEx webpage.
Shipping address:
Dr. Kang Zhang
Attn: Jenn Harmon
Moran Eye Center, University of Utah
65 Medical drive
Room 6620-C
Salt Lake City , Utah 84112
If you have any questions or need supplies, please contact us. Thank you for your help!
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