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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:

Experience with Technology and Accommodations in the Workplace by Adults who Have Low Vision or are Blind

Are you blind or do you have low vision? 
Have you worked within the last 5 years or are you seeking work? 
Do you use accommodations, for example assistive technology, reverse contrast, additional lighting, or braille?


If you said “yes” to these questions then we want to invite you to fill out our accessible online survey. Specific survey topics include:

  • Your current employment (including self-employment)
  • Seeking employment if you’re not currently employed and are looking
  • How you have learned to use assistive technology or tools
  • The hiring and onboarding process
  • Training provided by your employer
  • Working with IT staff
  • The social-emotional impact of visual impairment

In addition, there are sections for some participants based on their situation including:

  • Experiencing changes in vision in the last 5 years
  • Self-employment
  • Telework

The survey should take about 30-45 minutes to complete. You will have the opportunity to enter a raffle to win one of 15  $25 Amazon gift cards.
We’ll use what we learn from this survey to:

  • Help inform technology companies so they can improve their products for accessibility
  • Share with vocational rehabilitation (VR) professionals the challenges and solutions workers use, so they can better prepare their clients for work
  • Inform IT and HR staff so they can better meet the needs of those applying for and obtaining employment
  • Give individuals with vision loss information to ensure they can have a better understanding of how those like themselves use technology to be successful and how they overcome challenges they experience.


Take the Survey 

If you have any questions or need more information please contact Dr. L. Penny Rosenblum, AFB Director of Research, prosenblum@afb.org or 202- 202-469-6837.

The survey will close on Sunday evening February 28 at 11:59 Pacific time.

Updated: February 16, 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