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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.
Parent Research / Survey Opportunities
- Descriptions of Studies -
Identification, education, and referral to relevant clinical study opportunities of individuals with hearing loss
What:
This study aims to build a participant and caregiver community and to provide participants with information and awareness of genetic hearing loss as well as signpost participants to support services and to current and future Regeneron Pharmaceuticals, Inc. sponsored clinical research opportunities.
Why:
Approximately 1.7 children in every 1,000 babies are born with hearing loss. More than half or as many as 80% of these babies are born with hearing loss due to genetic variants. Regeneron Pharmaceuticals, Inc. has a clinical development program for the treatment and understanding of genetic hearing loss, particularly at birth.
Who:
Participants: Adults and families/caregivers of children who are deaf or hard of hearing and professionals and advocates in the field of hearing loss
Sponsor: Regeneron Pharmaceuticals, Inc.
Where: United States (US) and United Kingdom (UK)
When: This study is ongoing and is currently enrolling participants.
How: To learn more and/or register, go to: https://www.learngenetichearingloss.com?utm_source=hv_org&utm_medium=website&utm_campaign=genetic-hearing-loss-trials.
Research Study: Caregivers' Perspectives on Communication Modality Counseling
Dear Caregivers,
Thank you for showing interest in my research! I am a third year Doctor of Audiology student at Idaho State University. I am currently seeking parents and primary caregivers of children diagnosed with hearing differences/hearing loss to take my survey regarding communication modality counseling. The survey aims to gather valuable insights into families' experiences regarding the content, quantity, and feelings surrounding the counseling they received on communication and language options. My goal is to use these responses to discover actionable areas of improvement in counseling for pediatric audiologists and other early intervention providers. If you are a parent or primary caregiver to a baby or a young child with hearing loss, please consider taking my survey! It should take no more than 5-10 minutes to complete, on average. If you have any questions or concerns, please contact me at whitneymiller@isu.edu.
Online Survey of Deaf and Hard of Hearing Individuals Who Have Traveled, Moved, Lived, or Studied Abroad, or Who Are Currently Studying or Living Abroad
My name is Seika Amano, and I am a deaf student at Tsukuba University of Technology, a college for deaf students in Japan. I can communicate using English, Japanese, Japanese Sign Language, and a little bit of American Sign Language.
I am conducting this survey for my graduation project titled “An eBook to Share and Convey the Difficulties Faced by Deaf People Living Abroad.” My aim is to contribute to creating more inclusive environments in educational institutions and societies, and encourage more deaf people to study or travel overseas.
Who Can Be a Participant?
- Deaf and hard of hearing individuals who have traveled, moved, lived, or studied abroad, or who are currently studying or living abroad
- Target Population: International
What Does Participation Look Like?
- The online survey on Google Form will take about 10-15 minutes
- The English survey is here: https://forms.gle/rFfRcip3yBkfN7or6
- The Japanese survey is here: https://forms.gle/s1hEee9mxdSbwWKt6
Please feel free to share this with anyone you might know who is qualified.
For more information - Contact: a181201@a.tsukuba-tech.ac.jp
Transitions from pediatric to adult hearing care:
The experiences of teens who are deaf or hard of hearing and their families.
Nemours Children’s Health, Delaware wants to help make a change! Help us to understand how audiologists can best support adolescents and their parents as they transition from pediatric to adult care. We are recruiting parents/caregivers and adolescents ages 17-25 with hearing loss diagnosis and have been wearing hearing technology for at least a year. We are asking you to take a brief survey 10-15 minutes in length. At the end of the survey, you will have the opportunity to take part in the second phase of the study which will include a telephone or virtual interview. All participants participating in phase two will receive a gift card for their time. If you have any questions regarding the study, you can reach out to Melissa Stone Mengistu at melissa.stonemengistu@nemours.org.
Parent/Caregiver Survey Link
Adolescent Survey Link
Finding an Effective Measure of Religiosity and Substance Use Levels for the Deaf Community: A Pilot Study
I am Angela Masiello, and I am a graduate student at East Tennessee State University where I am studying experimental psychology. My thesis involves translating two English questionnaires into American Sign Language (ASL). The two questionnaires, the RSAS-5, and the TAPS, measure someone's levels of religiosity and substance use. To know if these questionnaires were translated appropriately into ASL, I am recruiting Deaf individuals to take a survey comparing the English versions to the ASL versions! This study will only take 20-30 minutes to complete and is done online by scanning a QR code. This study helps to advocate for the Deaf community by providing tailored healthcare programs (e.g., Deaf substance use recovery programs) and raising awareness for this underserved community.
Eligibility Requirements:
- Must be 18 years or older
- Present in the United States
- Must be Deaf
- Must have English as their primary language
- Must have internet access
For more information - Contact: masielloa@etsu.edu
Latino/Hispanic Parental Acceptance and Engagement in Pediatric Hearing Healthcare
The University of Utah College of Health is looking for Latino/Hispanic parents of children with hearing loss to learn more about Hispanic/Latino beliefs and attitudes on their child’s hearing loss and intervention. By participating, you can help us learn how audiologists can further support Hispanic families and enhance outcomes for children with hearing loss! You will be asked to participate in an interview and fill out a survey. Participation is voluntary.
Who Can Be a Participant?
- Hispanic/Latino parent or caregiver of a child with hearing loss
- Has been a minimum of 4 weeks since child was fitted with hearing aid(s) or bone conduction device(s)
- Child is less than 6 years old
- Has been a minimum of 1 year since child was diagnosed with hearing loss
- English or Spanish-speaking
What Does Participation Look Like?
- The survey and interview will take about 1 hour and 30 minutes
- The survey and interview are completed via Zoom videocall or in-person
- Earn a $50 Amazon gift card for completion of the full study!
Interested?
Call: 385-501-3275
Email: Crystal.Ortiz@utah.edu
This study is being conducted by Dr. Julie Lucero and Crystal Ortiz from the University of Utah. Being contacted to learn more does not mean you have to participate in this study.”
Neurocognition of Literacy in Children who are Deaf and Hard of Hearing
Does Your Child Use ASL or Wear Hearing Aids?
Participate in a research study about reading and brain development!
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:
- Children ages 10 – 17 who are d/Deaf, hard of hearing, and hearing.
- No metal in the body - includes cochlear implants and bone anchored hearing aids.
What to expect:
- A video interview
- Minimum of two sessions including fMRI (functional Magnetic Resonance Imaging)
- Standardized tests with scores provided to parents after participation
- Hearing test
- Travel and food accommodations to participants coming from around the country
- Pictures of your child’s brain
Find out if you’re eligible:
Take the 5-minute survey here! https://redcap.link/DHHReadingStudy
Contact Us:
- Lab email: BrainDevelopmentLaboratory@gmail.com
- Lab PI Dr. James Booth: james.booth@vanderbilt.edu
- (615) 875-1667
Translation of the Child Behavior Checklist Translated into ASL
The Deaf and Hard of Hearing Resilience Center (DHHCRC) research teams are translating mental health screening tools into ASL. Now, we need your support through participation in our studies.
You can be some of the first people to see our work and give us feedback!
WHO can participate?
- Deaf or hard of hearing people
- Age +18
- Bilingual with ASL and written or spoken English
- Parents or caregivers of children aged 1.5 to 18 years old.
HOW can participate?
Step 1: Take a brief screening (5 mins): Please scan the QR code below or click the link: https://gallaudet.edu/deaf-hard-hearing-child-resilience-center/deaf-and-hard-of-hearing-child-resilience-research/
If you are eligible for this study(s), we require a VP connection to verify that you are deaf or hard of hearing and an ASL user before sending the survey link(s).
Step 2: Take an ASL survey (Up to an hour)
Step 3: Take an English follow-up survey (Up to 30 minutes)
If you are not eligible at this time but would like to be contacted about future studies, you can share your contact information.
HOW can be paid?
We will pay $40 in Tango Gift Cards for completion of the full study.
- Study requires completion of 3 steps.
- Payment is divided across each step.
INTERESTED?
Step 4: Please fill out the screening form below to determine your eligibility: https://gallaudet.edu/deaf-hard-hearing-child-resilience-center/deaf-and-hard-of-hearing-child-resilience-research/
Step 5: Logos, photos, etc can be embedded in the WORD doc or sent separately as jpgs. Brochures and forms to be downloaded must be submitted separately as PDF’s.
The Impact of Auditory Access on the Development of Speech Perception
The Speech Perception Over Time (SPOT) lab at the University of Colorado Anschutz Medical Campus is conducting an infant developmental study.
The goal of our research is to improve services for children who are at risk for language learning (i.e., hearing loss, reading difficulties). We do this by measuring how infants tell the difference between speech sounds. A child’s ability to differentiate between speech sounds predicts their later language abilities. So being able to measure these abilities early in life may, over time, help improve later language outcomes.
Language learning can help build relationships, impact educational success, and personal empowerment.
Who can participate:
- Infants between 1 and 12 months of age
- Infants diagnosed with permanent bilateral hearing loss and use hearing aids
- English as the primary language spoken at home
What to expect:
- One to five in-person visits between 3 and 12 months of age on the CU Anschutz Medical Campus, a nearby Children’s Hospital Colorado Audiology Clinic, or the Colorado School for the Deaf and Blind.
- Visits are 2-3 hours in length and about 1 hour is completed with your baby sleeping or resting quietly.
- Time: The study will occur at 1-5 timepoints between 3 and 12 months of age
*additional visits may be asked - Compensation is provided up to $450
- Parking and some transportation may also be compensated
- To hear about the research experience from a previous participant go to: https://www.youtube.com/watch?v=SByMA3vEzdM
Contact us:
If you are interested in participating or for more information, you can email SPOT@ucdenver.edu or call us at 303-724-9262.
If you would like us to contact you, please fill out this interest form: https://redcap.link/SPOT_InterestForm
Principal Investigator: Kristin Uhler, PhD. COMIRB #22-2374.
The Development of Parent-Child Interactions
Parents of children who are D/deaf or hard of hearing are invited to participate in a study looking at parent child interactions. To be eligible, your child must have congenital hearing loss in both ears that is described as mixed or sensorineural. If you child has any other diagnoses or developmental needs, you will be connected with a member of the research team to discuss further and identify if you are eligible. In your home, you must use spoken English 70% of the time. You child needs to have at least one hearing aid or cochlear implant that they have been using for at least 12 months and started using before they were 18 months.
If you and your child fit those criteria you are welcome to reach out to the research team at derek.houston@uconn.edu or (860)341-2667
To participate you will complete a series of surveys about you and your child, then join us at a testing site where your child will complete some language and listing assessments and spend some time playing with you using a novel group of toys.
Project INCLUDE
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.
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 HADL@boystown.org or phone (531) 355-6350. Web site Link.
Para obtener información en español, envíe un correo electrónico a HADL@boystown.org 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
The 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:
- Children and adolescents aged 7 to 15 years
- Children with hearing loss in both ears
- Children who wear hearing aids
What to expect:
- A total of 6-8 hours of testing over the course of 2-3 days (1.5-3 hours per visit)
- Noninvasive imaging with MEG and MRI
- A series of brain games to test cognitive skills
- Brief visit with an audiologist
What is included:
- Travel (flights and/or mileage), lodging, and meal reimbursement for families living 50+ miles outside of Omaha
- Up to $170 for completing the study
- Daily tickets to local attractions included with visit
- A 3D-printed model of your child’s brain will be mailed after study conclusion
Contact Us:
If you are interested in participating or have any questions about our research, please contact our lab via email at casi.lab@boystown.org or call/text us at 402-249-9503.
Fill out this survey to be contacted by us: https://ihn.ripplescience.com/survey/tNJfujoGqqSJYjKCv/Pzfx8xWQiWup72Mfz/form
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 https://redcap.ucdenver.edu/ 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.
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
- Our genes provide instructions to our cells to make proteins that help us live and grow. The otoferlin gene provides instructions for the body to make otoferlin, a protein necessary for hearing.
- When there are changes, or mutations, in the otoferlin gene, the body may not be able to make functional otoferlin protein.
- Without functional otoferlin protein, sounds cannot be communicated from the ear to the brain, resulting in hearing loss.
- Children with otoferlin gene mutations typically have a type of SNHL called auditory neuropathy. Auditory neuropathy is a type of SNHL where the inner ear detects sound but cannot send the sound signal to the brain.
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?
- Screening period
During the Screening period, your child will receive assessments to confirm they qualify to join the study. - Study drug administration
If qualified, your child will have surgery to receive one dose of the study drug (using the study device) in one ear. Your child will stay overnight at the site after surgery so the study staff can monitor their health. - Follow-up visits
You and your child will attend 11 follow-up visits at the site over the course of 2 years. You and your child will also be expected to participate in a Long Term Follow-up Study (with annual visits) for an additional 3 years. - You may be eligible for travel reimbursement.
Who can join the study?
To join the study, your child must meet the following requirements*:
- Between age 7 to 17 years old (inclusive, Group 1a); between age 2 to 17 years old (inclusive, Groups 1b and 2) with sensorineural hearing loss
- Otoferlin gene mutations confirmed by genetic testing (genetic testing will be provided, as needed)
- Does not have cochlear implants in both ears
*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 www.otofclinicaltrial.com.
This information was provided in December 2023. For the most recent updates, please refer to clinicaltrials.gov.
The DIVERSE Collective: Combatting Ableism and Other Oppression for the Health and Well-being of Children with Disabilities
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 (https://pitt.co1.qualtrics.com/jfe/form/SV_b9JmeGls70MZJjg). If you are unable to do so, reach out to the study team via Kristyn Felman at kristynfelman@pitt.edu or call (412) 692-6410.
Listening & Literacy Among Children With Cochlear Implants
This study is done completely online.
Anyone who meets participant criteria and is interested can participate.
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: https://prezi.com/view/w1N9DI5BPOSfKoH6jyzc/
Those interested in learning more or participating in this study should contact Dr. James Mahshie at (301)-785-4428 or jmahshie@gwu.edu.
Registration can also be done at https://www.gwu-implant.org/
