Albinism Survey

Department of Ophthalmology and Visual Sciences
200 Hawkins Drive, 11136 PFP
Iowa City, Iowa, 52242-1091

Researchers at the University of Iowa invite all people with albinism aged 18 years or older to participate in a research survey (questionnaire). The purpose of this research survey is to learn more about eye problems in people with albinism. We know that albinism causes changes to the retina (the back of the eye) where the rods and cones responsible for vision are located, and there also may be other ways albinism affects people’s vision. This study may help us to better understand the causes of vision loss in albinism, and to develop new treatments. The study is also to learn more about how having albinism affects a person’s everyday life and social interactions. This may help us tell parents, teachers and employers how to support people with albinism at all ages.

The study is a survey that can be taken online. You will sign in and questions will be presented, and you will type in your answers. You can ask someone else to enter your answers if that is easier. The survey does not ask any questions that would tell other people who you are. You are free to skip any questions you do not feel comfortable in answering. The answers will be collected and analyzed to help us understand albinism better.

Please only do the study questionnaire one time so we will have an accurate number of the people who participated. Please only answer the study questionnaire if you have albinism, including Hermansky Pudlak Syndrome or other syndromes with albinism.

If you are interested in participating in this study survey, please find the survey at the following link:

Albinism Research or copy and paste the following address in your internet browser: https://uiowa.qualtrics.com/jfe/form/SV_09yawltIvvNiC7X. This link will take you to the survey’s home page where you can obtain more information about this project and start the survey. Thank you very much for your consideration.

Should you have any questions, please do not hesitate to contact us at the email addresses below:

Angela Mahoney, BA
Study Coordinator
University of Iowa Department of Ophthalmology and Visual Sciences

Arlene Drack, MD, ABO, NBME Diplomate
Ronald Keech Professor of Pediatrics and Ophthalmology and Visual Sciences
The University of Iowa, Carver College of Medicine

Noel Estrada-Hernández, PhD, CRC
Professor of Rehabilitation and Mental Health Counseling
The University of Iowa, College of Education