Get Involved with Research Opportunities

Are you interested in learning more about ongoing research studies involving people with albinism for yourself, your child or your patients? Here you will find information about current research studies and opportunities on many aspects and types of albinism. Please check back often to learn about new and upcoming opportunities!

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

Children’s Mercy Hospital: Survey of Sleep Problems for Children with Visual Impairment

Sleep in Visual Impairment Survey

Children’s Mercy Hospital of Kansas City, MO is conducting a study to find out what sleep problems are encountered in children with visual impairment.

This online questionnaire takes approximately 10 to 20 minutes to complete. You must be the parent of a child age 1-17 years with visual impairment to participate. Completion of the survey serves as your voluntary agreement to participate in this research project and certification that you are 18 or older.

More information

Direct Survey Link

Updated: July 23, 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

Clinical, Cellular, and Molecular Investigations Into Oculocutaneous Albinism

A study on oculocutaneous albinism is underway at the National Institutes of Health (NIH) Clinical Center in Bethesda, Maryland. This project, directed by Dr. David R. Adams, is recruiting persons ages 1-80 diagnosed with oculocutaneous albinism to participate.

Participants who are accepted into the study will undergo clinical evaluations at the NIH Clinical Center where they will provide samples of cultured cells, plasma, serum and urine for future studies. Mutation analysis will be performed on known OCA and/or OA genes and study doctors will search for other genes responsible for albinism. Routine admissions will last 3 – 4 days and occur every 2 – 3 years.

Interested in participating? Please reference the “eligibility criteria” section on the study’s webpage to see if you qualify!

More information: https://clinicaltrials.gov/ct2/show/study/NCT00808106

Updated: July 31, 2019

ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world.

Updated: January 31, 2018

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

Rare Lung Disease Consortium & HPS Network Study on Hermansky-Pudlak Syndrome Lung Disease

HPS Research Centers are opening nationwide to conduct new research on the lung disease of HPS.
Please contact the HPS Network at 516-922-4022 or email: info@hpsnetwork.org for more information.
Updated: January 31, 2018

Do you know of additional research studies for people with albinism? Contact the NOAH Webmaster for the opportunity to have it added to this page.

Note: Sharing the above information does not constitute an endorsement by NOAH of these or any research studies.