Announcing the NOAH Research Program!
We are excited to announce the launching of the inaugural NOAH Research Program!
Since its inception, NOAH has maintained a connection to research. Dr. Carl Witkop, one of NOAH’s founders, was a renowned international albinism researcher. NOAH has always had a Board of Scientific Advisors, and NOAH’s conferences have included presentations by top scientists in albinism research. Although NOAH has regularly shared research information with its community and written letters of support for research grant applications, NOAH has never before–until today–had a formal research program that supports and funds new research in albinism.
The short-term vision for the NOAH Research Program is to establish a formal research program focused on supporting albinism research. We will establish processes and procedures for a sustainable research program with a people-centric approach.
We are working with experienced researchers and program managers to build a research program that will use a scientific peer-review process to identify methodologically rigorous research proposals that have the potential to improve the lives of those affected by albinism. We are expecting to fund the first round of research projects later this year.
NOAH will become a leading voice in albinism research through the work of its Research Program. Funded research will be patient-centered and will help develop a greater understanding of albinism. The Research Program can support this vision in two ways: 1) supporting impactful research and 2) building a community of top-notch researchers who are engaged with the albinism community. This is an opportunity not just to fund albinism research, but also to shape research to answer questions most important to people with albinism like, “Am I at a higher risk of cataracts?” “Should my child get nystagmus surgery?” The goal will never be to “fix” albinism, but instead to support and enhance quality of life for PWAs of all ages.
We are too! The success of this Research Program relies on the support of our community. If you are interested in supporting the NOAH Research Program, consider making a gift:
Call For Proposals – Summer 2021
NOAH is proud to announce a request for proposals to support research on the visual system in albinism. Proposals focusing on research in all types of albinism will be considered. Proposals may utilize cell or animal models of albinism and/or human patients with albinism.
OUR RESEARCH PRIORITIES: Vision / visual system
1. Elucidating pathways/mechanisms (molecular or systemic) 2. Therapeutics
3. Biomarker development
We expect to fund up to a total of $100,000 in grants, distributed in the following programs:
- Established Researcher Program: $50,000 ($25,000 per year for two years)
- Intended to provide bridge funding for or to support expansion of existing projects from established researchers
- Pilot Grant / New Innovations Program: $25,000 ($25,000 given in one lump sum)
- Intended to provide funding to generate pilot data for new projects from junior or established researchers
Applicants must hold a Ph.D., M.D., D.M.D., D.V.M., D.O., or equivalent degree and have a faculty position or equivalent at a domestic or foreign: non-profit organization, or public or private institution, such as a university, college, medical school, hospital, research institute, or laboratory.
Letters of intent will be reviewed for scientific quality and relevance to NOAH’s research priorities. Proposals with high translational relevance will receive priority consideration.
- Monday, July 26, 2021 at 5pm: LOI Form Due with Expression of Interest Video (2-3 minutes) or Written Summary (500 words maximum)
- Monday, Aug 23, 2021: Notification of selection for Full Application
- Monday, Oct 25, 2021: Full application Due
- January 2022: Grants Awarded
Other Albinism Research
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:
Prominent Researchers & Institutions in Albinism Research:
Hermansky-Pudlak Syndrome Network (HPS Research & other updates)
Scientific Literature Related to Albinism:
Other Studies Related to Albinism:
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:
Updated: March 19, 2021
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
Updated: March 19, 2021
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
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/
Updated:August 1, 2020
Crandall University on Visual Impairment/Blindness in Emerging Adulthood
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 firstname.lastname@example.org or by calling 1-902-526-0458.
Updated: December 6, 2019
University of Iowa Hospitals & Clinics and National Advanced Driving Simulator
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:
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‐email@example.com 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
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 firstname.lastname@example.org 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: