Currently Enrolling Study

Ocular Manifestations of Fabry Disease Study

Purpose of Study:
This project is being done to answer questions related to the effects of Fabry disease on eye health and how it relates to the disease overall. Fabry Disease is a genetic condition that can cause vision problems which can potentially become blinding. Both adults and children with Fabry Disease will be included in this study, as well as people without Fabry Disease. We aim to identify and detect the early signs of eye problems associated with the disease that precede potentially blinding events. Additionally, we would like to identify and gather information on eye discomfort in those affected by Fabry disease, since this may affect a patient’s quality of life.

What is involved?
This study will last for 5 years. You will have study visits every 6 months that involve dilated imaging of the eyes and other tests that measure various aspects of your eye health. You may also have your vision tested and an eye exam performed if you haven’t seen your eye doctor recently. This testing will take several hours on one day.

Compensation:
There is a $50 stipend for each visit completed.

You may be eligible to participate in this study if you meet these criteria"

You have been diagnosed with Fabry disease OR you are an age and gender matched control for someone enrolled (i.e., you are the same age and gender as someone enrolled and do not have any condition that affects your eyes).

Participation Form

I am interested in participating in the Ocular Manifestations of Fabry Disease Study I am a family member of someone who is interested in participating in the Ocular Manifestations of Fabry Disease Study

First Name *

Last Name *

Email Address *

Phone Number *

City, State *

Family Member’s Name (if applicable)

Have you (or your family member) been diagnosed with Fabry disease? * Yes No

Have you previously been in a research study at the Eye Institute? * Yes No

Are you currently, or have you ever been, a patient at the Eye Institute? * Yes No

Comments/Questions

By submitting this form, I acknowledge that I would like to be contacted about the Ocular Manifestations of Fabry Disease Study and understand that submission of this form in no way obligates me to participate in this study.

We will contact you as soon as we can. Thank you for your patience.

If you have questions, please contact Erika Nelson at (414) 955-2001.