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Albinism Research

Albinism Research Current Research Studies, Information, and Opportunities for the Albinism Community

Please note: The following information is provided for your reference. Any questions regarding an item below should be directed towards the publishing institution/author.

Do you know of an additional research study or information source for people with albinism?
Contact the NOAH Webmaster for the opportunity to have it added to this page.


Current Clinical Trials Related to Albinism:

NIH ClinicalTrials.gov


Prominent Researchers & Institutions in Albinism Research:

Brian Brooks, MD

National Eye Institute – Pediatric, Developmental & Genetic Ophthalmology

National Eye Institute – Ophthalmic Genetics & Visual Function Branch

Hermansky-Pudlak Syndrome Network (HPS Research & other updates)

University of Minnesota – Albinism Genetic Database

American Foundation for the Blind


Scientific Literature Related to Albinism:

National Library of Medicine – PubMed.gov


Other Studies Related to Albinism:

Survey about Driver Assistance Systems

Bioptic telescope drivers and normal vision drivers who are 18+ years are invited to participate in a survey study (project 2020P002139) about Advanced Driver Assistance Systems being conducted by researchers at Schepens Eye Research Institute, Boston, MA .

Participants must be current drivers and speak fluent English.
The survey takes about 30 minutes and will be conducted over the phone.

If interested, please contact Chrysanthi Stevens:

202-276-3231

Chrysanthi_Stevens@MEEI.HARVARD.EDU

Updated: March 19, 2021

Research Participants with Visual Impairments Needed for a Study About Physical Education

Dear parents,

We are conducting a study examining the experiences of youth (aged 12-17) with visual impairments in integrated physical education classes. This year-long study will include two (2) interviews with a research team member, electronic diaries, monthly email communications, and a survey at the beginning and at the end of the study. This study will take place from May 2021 to April 2022. All data are collected online, and participants can be from anywhere in the U.S.

To conduct this study, we are seeking youth (aged 12-17) with visual impairments who are enrolled in physical education classes with their peers during the 2021-2022 school year to participate. We expect that the amount of time to participate each month will be less than an hour, except for months when interviews take place, which would then be two hours. All responses will be confidential, and data will only be used for research reports and presentations.

Participants will be offered $250.00 in Amazon gift cards (total) to thank them for participating in this year long study. Participants will be offered $75.00 at the culmination of the first interview session (August-September 2021), $75.00 just prior to winter break (December 2021) and another $100.00 at the culmination of the final interview session (Spring 2022). Participants will be told that the gift card funds are a thank you for completing each aspect of the study (interviews, monthly prompts, diaries, etc). Participants who discontinue participation before the first interview will not be offered a gift card, those who complete the first interview but discontinue participation before winter break will not be offered the second gift card, and those who discontinue prior to the second interview will not receive the final gift card. Gift cards will be distributed directly to the participants via email, and parents will be CCed on the delivery.

If you, or someone you know, is interested in participating, or have questions about participation, please contact me via the information below. Thank you,

Justin Haegele, PhD

Old Dominion University
jhaegele@odu.edu

Updated: March 19, 2021

Eye and Vision Problems of People with Albinism

Respondents ages 18+ wanted for study on eye and vision problems of people with albinism

Community member and Professor of Rehabilitation and Mental Health Counseling at The University of Iowa, Noel Estrada-Hernández, PhD, CRC, is conducting an anonymous research study to better understand the eye and vision problems of people with albinism, as well as its effect on social and psychological factors.

For more information or to take the survey visit: https://uiowa.qualtrics.com/jfe/form/SV_09yawltIvvNiC7X

Updated:September 26, 2020

Albinism and Mental Health Survey

Respondents ages 13-25 wanted for Albinism and Mental Health Survey

 

Community member and Lesley University student, Rose Piscuskas is conducting an anonymous survey about the impacts of albinism on mental health as part of her capstone project. If you’d be willing to participate, please take this survey no later than August 15th at https://forms.office.com/Pages/ResponsePage.aspx?id=zK7J9qEkBUmDNjsFVFRV0O94m6QHTsZKkVq2F_L_S2BUM0hGVEtZNTQyWlU3Rzc0SlpFSVRTVjBQOC4u

Updated:August 1, 2020

Crandall University on Visual Impairment/Blindness in Emerging Adulthood

Self-Concept and Motivation in the Visually Impaired/Blind

Are you between the ages of 18-30 and currently living with a visual impairment?

If the answer to both of these questions is yes, your assistance is requested. “Self-Concept and Motivation in the Visually Impaired/Blind” is a qualitative study being conducted at Crandall University in Moncton, NB. This study aims to understand better the experience of having a visual impairment/blindness in emerging adulthood, specifically how it impacts the self-concept and motivation.

This study will use a qualitative interview questionnaire asking questions that pertain to the individual’s self-concept and motivation. The interviews will be conducted with participants individually. This process will be completed in person, or over video-chat and is expected to be one hour in length. Informed consent will be obtained before the beginning of the interviews, and as participation is voluntary, consent may be withdrawn at any time. Information collected for this study will include no identifiable information, such as names, or dates of birth, etc. Data will be kept on a password-protected computer, accessible only by the primary researcher.

Your participation would be much appreciated in helping make this research a success. For further questions or if interested, individuals can contact the primary researcher, Alisha Longmire at longmireali@crandalluniversity.ca or by calling 1-902-526-0458.

Updated: December 6, 2019

University of Iowa Hospitals & Clinics and National Advanced Driving Simulator

Bioptic Telescope Driving Study

Colleagues at the University of Iowa Hospitals & Clinics and the National Advanced Driving Simulator are looking for volunteers who are required to wear a bioptic telescope while driving to participate in a research study. The purpose of the study is to understand how drivers with visual impairments use their bioptic telescopes when they drive. The study will be conducted in two phases: a questionnaire and an on‐road driving phase. The online questionnaire will collect demographic information along with details about your visual impairments, health history, medication use, driving history & patterns, and bioptic telescope use while driving. It will take approximately 10 to 15 minutes to complete.

The information gained from the questionnaire will assist in the development of the on‐road driving phase. At the completion of the questionnaire, you will be asked if you would like to be considered for participation. If you are interested, we will collect your name and contact information. Completing this section does not obligate you to participate. Only a small sample of those who provide contact information will be contacted.

Who is eligible?
 Current valid U.S. Driver’s license
 Current license requires the use of bioptic telescope to drive

If your meet these requirements and you are interested in participating, please go to the following link to complete the questionnaire:
https://uiowa.qualtrics.com/jfe/form/SV_0PzwGjfryMJn7PT.

If you have any questions or have trouble completing the questionnaire, please contact Cheryl Roe at the National Advanced Driving Simulator by email at cheryl‐roe@uiowa.edu or call 319‐335‐6803. For more information about the National Advanced Driving Simulator, please go to www.nads‐sc.uiowa.edu.

Updated: October 31, 2019

Laboratory for Low-Vision Research at the University of Minnesota

Study on Visual Reading Technology for Adults with Low Vision

Research is being conducted at the Minnesota Laboratory for Low-Vision Research at the University of Minnesota. The project is directed by Dr. Gordon E. Legge. The goal of the research is to enhance our understanding of the use of reading technology by people with low vision. The results will be useful in designing reading aids for low-vision reading and for guidance in selection of appropriate reading aids for individuals with different forms of low vision.

The study involves filling out an online survey. It will take about one hour to complete. It involves questions about your vision status, the types of reading aids you use, and the reading activities you do. We invite you to participate in this survey if you are an adult with low vision, if your vision has not gone through any major changes in the past year, and if you read visually for some purposes. Low vision is defined as acuity less than 20/60 with best prescribed glasses or contacts, or a visual field less than 20 deg in extent. Low vision does not refer to people who can achieve normal vision with the aid of glasses or contacts, nor to people who have normal vision in one eye and reduced vision in the other eye. Subjects will be compensated with $20 gift cards (such as iTunes, Target, Amazon or Starbucks gift cards). We welcome people who live outside of the U.S. to take our survey. Unfortunately however, we are only able to compensate U.S. residents with gift cards.

To access the survey, please email Christina Granquist at lowvis@umn.edu and she will send you a personalized link to the reading survey.

For questions or more information about the survey, please contact Christina Granquist at the Minnesota Laboratory for Low-Vision Research:
Christina Granquist
E-mail: lowvis@umn.edu
Phone: 612-625-4516

Updated: January 31, 2018