Research / Survey Opportunities

Agencies, Organizations, Universities and others are often looking for participation of families and professionals for current research and survey projects. Each opportunity listed below has contact information if you would like to participate. Please contact the specific entity that is sponsoring each research/survey opportunity if you would like more information.

Unless otherwise noted, Hands & Voices does not necessarily promote the goals and objectives of listed research/survey opportunities and participants are advised to clarify any questions/concerns prior to participation with contacts listed for each research/survey opportunity.

For information on submitting your project for inclusion on this page please read our Submittal Request Sheet.

Thru 2026 Advancing Hearing Healthcare and Outcomes for Individuals with Down Syndrome Across the Lifespan Omaha, Nebraska. Available to coordinate with partner sites across the US.
January-May 2024 Understanding the Experiences of Individuals with Disabilities and Family Caregivers
with Access to Section 504
Feb 25, 2024-Jan 31, 2025

Research Study: Understanding Experiences of Families of Deaf/Hard of hearing Children in the EHDI System

Nationwide (US EHDI System)

Sept 2023 -
The end date to accept applicants is expected to be:
mid 2026

Gene Therapy Trial for Otoferlin Gene-mediated Hearing Loss International
Thru May 2024 Parent-Child Sex Communication Among Parents of Deaf Youth Nationwide
Oct 2023 - Sept 1, 2024 Oral Narratives of Bilingual Pediatric Cochlear Implant Users Nationwide
Oct 2023 - May 30, 2024 Occupation Needs of Caregivers of Children with Disabilities Nationwide
May 2023 - May 2024 Empowering Parents of Deaf and Hard-of-Hearing Children: A Mixed Method Study to Develop a Comprehensive Framework for Understanding and Choosing Communication Modalities Nationwide
Ongoing The DIVERSE Collective: Combatting Ableism and Other Oppression for the Health and Well-being of Children with Disabilities Nationwide
Thru April 4, 2024 Study on Literacy and Outcomes of Deaf and Hard of Hearing (dhh) Students in Rural Public Schools Nationwide
Ongoing Listening and Literacy Among Children With Cochlear Implants Worldwide
Thru December 2024

Neurocognition of Literacy in Children who are Deaf and Hard of Hearing



Parent Research / Survey Opportunities

- Descriptions of Studies -



Boys Town logo

Advancing Hearing Healthcare and Outcomes for Individuals with Down Syndrome Across the Lifespan

Our primary location is in Omaha, Nebraska, with potential opportunity for travel funding for qualifying participants.  We also have a research vehicle (see picture below) available to coordinate with partner sites across the United States.

Photo of Boys Town mobile research trailer

Up to 80% of individuals with Down syndrome have hearing loss at some point during their life, including fluctuating, temporary and permanent hearing loss. This hearing loss is significant because prior research has shown that the development of hearing and speech perception requires years of quality experience with sound, extensive language knowledge and maturation of executive function. One goal of this project is to characterize auditory development for individuals with Down syndrome. Another goal is to improve assessment tools for evaluating hearing and speech perception in individuals with Down syndrome across the lifespan. The results of this study have important clinical implications.

Boys Town National Research Hospital® is seeking participants ages 7 months to 65 years for a new study to advance hearing healthcare and outcomes for individuals with Down syndrome.

Participants hear sounds that are presented through a speaker or headphones. Sometimes there are background sounds, such as noise or people talking. We often use a game format to make sure the listening activities are interesting. Sounds are played at a comfortable level.

Individuals will receive a hearing test and language test for participation in this study. Compensation for this study is $20 per hour.

If you would like to learn more about this study, please contact Jenna Paulsen by email or phone (531) 355-6674. For information in Spanish, please email or phone (531) 355-6350. Web site Link.

Para obtener información en español, envíe un correo electrónico a o llame al (531) 355-6350.

This study is funded by the National Institutes of Health – National Institute on Deafness and Other Communication Disorders (NIHNIDCD). Grant #s R21 DC02002 and R01 DC020229.



The Impact of Hearing Loss on Cognitive and Brain Function in Children and Adolescents

Casilab logoThe Cognitive and Sensory Imaging (CASI) lab at the Institute for Human Neuroscience is examining the impact of hearing loss on cognitive and language outcomes in children and adolescents. We hope to understand how our brains work during attention, memory, and language tasks and how hearing loss changes these processes in the brain.

Who can participate:

Families with:

What to expect:

What is included:

Contact Us:

If you are interested in participating or have any questions about our research, please contact our lab via email at or call/text us at 402-249-9503.

Fill out this survey to be contacted by us:



Understanding the Experiences of Individuals with Disabilities and Family Caregivers with Access to Section 504

Dear Parents, caregivers, students, and people with disabilities:

We hope that your experiences with Section 504 will inform the development of an advocacy program to improve access to high-quality Section 504 plans for individuals with disabilities. We will ask you a series of questions regarding your experience with Section 504. You can choose not to answer at any time. You can skip any questions. You can take a break at any time. You can end the interview at any time. Your honest feedback about your experience with Section 504 will be very helpful in improving the system.

You must fill out the following documents: the consent form, the pre-screen form, and the demographic survey. All together, they should take between 15-20 minutes to be completed. You can use the following link to complete the forms and the survey:

Contact information:

  1. Dr. Meghan Burke:
  2. Dr. Saury Ramos Torres:

Thank you, Saury


Understanding Experiences of Families of Deaf/Hard of hearing Children in the EHDI System

Primary Investigators: Deborah Mood, PhD and Kylie Johnson, AuD.

Who?  Families of Children who are D/HH who have participated in hearing screening, diagnosis and early intervention (EHDI) anywhere in the United States within the past ten years. (Children ages 13 and under.)

What? Take a 10–30-minute survey addressing questions about your child and your family’s experience

Why? We want to better understand families’ experiences, to improve hearing screening, diagnosis and intervention especially for children with co-occurring developmental disabilities. We invite ALL families of children who are D/HH to participate.

Are there any risks? All responses are confidential and cannot be linked you. If you would like to enter an email address at the end of the survey, you can be entered to win a $25 electronic gift card. You can choose to discontinue the survey at any time.

How? Complete the survey at or at the QR Code at right.  The study ends January 2025. This is a research study approved by University of Colorado Anschutz COMIRB #24-0150.

QR code



Gene Therapy Trial for Otoferlin Gene-mediated Hearing Loss

A Phase 1/2 Trial of AAVAnc80-hOTOF Gene Therapy in Individuals with Sensorineural Hearing Loss Due to Biallelic Otoferlin Gene Mutations

Does your child have sensorineural hearing loss?

Learn more about a clinical research study for children with hearing loss caused by specific genetic changes, or mutations, called otoferlin gene (OTOF) mutations.

What is the AK-OTOF-101 study?

The goal of the study is to find out if the study drug, administered using the study device, is safe and improves hearing in children with sensorineural hearing loss (SNHL) due to otoferlin gene mutations.

About genes and hearing loss

What are the study drug and study device?

The study drug (AAVAnc80-hOTOF, or AK-OTOF) is a gene therapy. This gene therapy is designed to deliver a working copy of the otoferlin gene to cells in the ear. With a working copy of the gene in the cells of the cochlea, the organ of hearing, the body may be able to make functional otoferlin protein and may improve hearing.

The study drug will be administered to the inner ear during a surgical procedure using the study device.

Both the study drug and the study device are investigational, which means they can only be used in research trials. They have not been approved by regulatory authorities like the US Food and Drug Administration (FDA) or European Medicines Agency (EMA). This is the first time the study drug and the device are being used in humans.

What will happen during the study?

Who can join the study?

To join the study, your child must meet the following requirements*:

*Other study requirements will apply.

What is a clinical research study?

Clinical research studies help scientists and doctors explore whether a medical strategy, drug, or device is safe and effective for people. Before a new study drug or study device can be approved and made available to the public, it must go through phases of clinical research. Each phase helps researchers learn more and relies on volunteer participants.

For more information about the AK-OTOF-101 study, or to reach out to a clinical trial site conducting the study, visit

This information was provided in December 2023. For the most recent updates, please refer to

[ Download Brochure ]



Parent-Child Sex Communication Among Parents of Deaf Youth

Dear Parents,

A warm hello from Gallaudet University! My name is Holly Salem, I am a doctoral student in Gallaudet’s Clinical Psychology Program. I am currently seeking parents who have children who are deaf to participate in my research about how parents communicate with their deaf adolescents about sex. My goal is that this research will inform parents, professionals, and teachers about the special skill sets and needs of this unique population and their families.

Participants must:

(1) Be 18 years or older

(2) Use sign language with their child

(3) Have access to technology to complete the survey

Participants will be compensated by entering an anonymous raffle for the chance to win one of five $30 gift cards.

For the survey link, please contact Holly Salem at This study has been approved by Gallaudet University Institutional Review Board (IRB) for the protection of human subjects: #FY-24-5.



Oral Narratives of Bilingual Pediatric Cochlear Implant Users:

A Comparison of oral narrative skills of simultaneous English-Spanish Bilingual Cochlear Implant Users and Typically Developing Peers 

Gallaudet logo


This study aims to document the impact of language access and language exposure on oral narrative skills in both English and Spanish for bilingual children. 


Families with…


This research project aims to explore the oral narrative skills of English-Spanish bilingual CI users and explore the relationship between language access/ exposure and oral narrative skills.

Parents will participate in an interview, discussing the language experience of their child. Children will complete two sessions of assessments, one in English and one in Spanish, which will ask the child to follow directions, label pictures, repeat sentences, and make up a story.

(This is a dissertation research project; as such, results from the study will be compiled and published as a dissertation and presented at the author’s dissertation defense.)



If you would like to participate or have any questions about the study, please contact -  

If you have any further questions about the study, you may contact -



Occupation Needs of Caregivers of Children with Disabilities

QR code

Within the project, we hope to identify the unique needs of caregivers of children with disabilities. From a thorough search in the literature, there is a lack of OT interventions that are aimed at addressing the caregivers. The overall scope of this study is to survey caregivers on their quality of life, stress levels, coping skills, mental health, and physical health. Through the needs assessment we can identify the specific needs that are an overarching theme in the data to develop a learning resource or module and resource for the caregivers to reference. This data will then identify what they need to include in their interventions and potentially provide a resource for the OT’s to utilize that is backed by data. Through this the goal of the study will be to have a site implement this service to the caregivers, whether this be through online modules, physical deliverables or a combination of both.

Here's a link to our survey: 

We've also included a flyer to distribute to caregivers and other networking facilities that you may have. We appreciate your consideration and willingness to share our survey with others.

Contact Information:


Hallie Allen, OTS:
Magen Fortin, OTS:
Jessica Tarantino, OTS:


Dayna Maniccia, DrPH, MS; Associate Professor and Department Chair, Interdisciplinary Studies Department: 

Deborah Collette: OTD, OTR/L; Associate Professor and Program Director, Occupational Therapy Department 



Empowering Parents of Deaf and Hard-of-Hearing Children: A Mixed Method Study to Develop a Comprehensive Framework for Understanding and Choosing Communication Modalities

Dear service providers,

My name is Sumaira Gul Mushtaq. I am a doctoral student and the principal researcher of this study. As a Speech-Language Pathologist (SLP) specializing in Early Intervention for deaf and hard-of-hearing children and their families and a mother of a deaf/blind child, I am passionate about understanding the factors contributing to parents' decision-making process regarding communication modalities/options.

GEOGRAPHICAL LOCATION: I am looking for service providers such as Audiologists, Speech-Language Pathologists (SLPs), or Teachers of DHH and their families nationwide.

AIM OF THE STUDY: This study aims to create a comprehensive framework that will empower hearing parents of deaf and hard-of-hearing children by providing them with the necessary information to make informed decisions. By understanding the perspective of service providers like you, we can enhance the support and guidance provided to parents, leading to more informed decisions and positive outcomes for the children.

WHAT IS INVOLVED IN THE STUDY? I invite you to participate in a critical survey exploring service providers' role in parents' informed decision-making process regarding choosing communication options for their DHH child. As audiologists, SLPs, and TODHH professionals, your expertise shapes the future for these children. With new IRB approval, I am embarking on a journey to uncover your critical role in guiding parents' choices.

qr code

Join me in this vital research endeavor, and let's empower families together. Your voice matters!

Take the survey now and be part of the change: 

Sumaira Gul Mushtaq, M.S., CCC-SLP 
Phone: 510-449-2092




The DIVERSE Collective: Combatting Ableism and Other Oppression for the Health and Well-being of Children with Disabilities

Diverse infographic

A research study being conducted at the University of Pittsburgh would like to talk with people who have knowledge about how to improve the health and well-being of the children and youth with disabilities who are most likely to be treated differently due to their race or income or for other reasons. 

We know that people with disabilities are sometimes treated differently by the services and supports available, which can lead to poor health.  Children with disabilities who might also experience unfair treatment or discrimination related to their race or income or other factors are especially at risk for poor health.  Because not much is known about how to fix this, parents or caregivers of children with disabilities (age 0-26 years) and young adults with disabilities (age 18-26 years) are invited to participate in virtual conversations about how to make things better.  Our goal is to identify solutions for the unique problems faced by children and youth with disabilities who might also experience unfair treatment related to their race or income or other factors.

If you are willing to share your expertise, we would very much like to speak with you.  We will usually use a Zoom video call and speak to people in small groups, but we are ready to offer accommodations or an alternative method if Zoom does not work for you.  Following the group conversation, you will receive a $100 gift card with our thanks for helping us do this research.  Please let us know that you are interested by filling out this brief form (  If you are unable to do so, reach out to the study team via Kristyn Felman at or call (412) 692-6410.



NAU school logo

Study on Literacy and Outcomes of Deaf and Hard of Hearing (dhh) Students in Rural Public Schools.

Researcher is seeking to learn the experiences and perceptions of parents, teachers, and all advocates who have raised, taught, and advocated for Dhh students/children in the past.

Confidential Individual Q and A interviews will be conducted In-person or via Zoom Conference Call. Zoom Chat and/or ASL Interpreter provided if needed.  Interview Questions Provided in Advance. ALL interview participant names will be kept confidential.

CONTACT Lori Chapman for more information and to schedule an interview at: or by phone at: (662) 416-7756.




GWU logo

Listening & Literacy Among Children With Cochlear Implants

This study is done completely online.

Anyone who meets participant criteria and is interested can participate.

Little girl reading

This study examines auditory perception factors that might impact literacy development in children with cochlear implants.  There have been auditory perception factors implicated in reading abilities in hearing kids, but not much done in looking at these factors in kids with hearing loss, particularly those with CIs. Families who participate will be compensated.

Participants should meet the following criteria:

- Children age 7-12

- Child’s hearing loss (severe-profound) was detected at or near birth

- Child received at least one cochlear implant prior to the age of 3

- Child relies on spoken English for communication

- Child exhibits no other disabilities

For an overview go here:

GWcicl logo

Those interested in learning more or participating in this study should contact Dr. James Mahshie at (301)-785-4428 or

Registration can also be done at






Vanderbilt Logo

Neurocognition of Literacy in Children who are Deaf and Hard of Hearing

Researchers from Vanderbilt University at the Brain Development Lab are conducting a first of its kind study looking at how d/Deaf, hard of hearing, and hearing children’s brains develop reading skill. We are particularly interested in how varying communication modes (spoken English, ASL, or use of both) may change how the brain develops. Participants from around the country are encouraged to apply for our study in Nashville, Tennessee. Travel accommodations are provided to those eligible. Fluent signing members of the lab are available to meet with parents and participants who communicate in American Sign Language.

Who can participate:

What to expect:

Find out if you’re eligible:

Take the 5-minute survey here!

Contact Us:


Back to top