Medical College of Wisconsin Ophthalmology and Visual Sciences Research Study - Albinism

Purpose of study:
This research study is being conducted to understand how retinal development is altered in individuals with albinism.

What is albinism?
Albinism is a condition in which the production of pigment is disrupted. Albinism can be one of two major forms, ocular or oculocutaneous. Ocular albinism only affects the pigmentation of the eyes, while oculocutaneous albinism affects the eyes, skin, and hair. The latter form of albinism can range from mild to severe, depending on the gene that is disrupted. Importantly, pigment appears to play a role in the development of the eye, and the disruption of pigmentation results in under-development of the retina at the back of the eye. Therefore, we hope to better understand retinal development by studying the eyes of people with various forms of albinism.

What is involved in our research?
This non-invasive imaging study may include one or more visits to the Eye Institute. Research volunteers will be asked to complete an ocular health questionnaire and a series of vision tests, and may be asked to give a may be asked to give a blood sample, saliva sample or cheek swab to test for the mutations that cause albinism. In addition, we will use various imaging devices to take pictures of the eye – including optical coherence tomography (OCT), fundus photography, and adaptive optics retinal imaging. At least one eye will be dilated during the visit. There is no direct health benefit to volunteers. Each visit typically takes about 3 hours.

Compensation:
Research volunteers will receive $15 per hour for their time. 

• You may be eligible to participate in this study if you meet these criteria.
• You are at least 5 years old.
• A doctor has told you that you have albinism or ocular albinism.
• You are willing and able to provide informed consent.

More Information:
Contact: (414) 955-AOIP 
AlbinismStudy@mcw.edu 

IRB Approval:
PRO00023898
3/16/2015