HomeResearch / 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 -
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 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: https://redcap.vanderbilt.edu/surveys/?s=3FLPTCM48ER4REEY
Contact information:
- Dr. Meghan Burke: meghan.burke@vanderbilt.edu
- Dr. Saury Ramos Torres: saury.ramos-torres@Vanderbilt.edu
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 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.
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 holly.salem@gallaudet.edu. 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
Purpose:
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.
Participants:
Families with…
- children ages 5-10
- children who received cochlear implants before the age of 3
- children exposed to both English and Spanish
Introduction:
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.)
Researchers:
- Caryn Heskey, Doctoral Student, Department of Hearing Speech and Language Sciences, Gallaudet University
- Karen Garrido Nag, Chair and Research Center Director, Department of Hearing Speech and Language Sciences, Gallaudet University
Contact:
If you would like to participate or have any questions about the study, please contact -
- Caryn Heskey by email at caryn.heskey@gallaudet.edu.
- Caryn Heskey by phone at (240) 552-9421
- Developmental Neurolinguistic and Cognition Lab at DNCLAB@gallaudet.edu
If you have any further questions about the study, you may contact -
- Gallaudet University Institutional Review Board for the Protection of Human Subjects (IRB) at irb@gallaudet.edu.
- Flyer
Occupation Needs of Caregivers of Children with Disabilities
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: https://www.surveymonkey.com/r/BDNRZFF
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:
Students:
Hallie Allen, OTS: allenh2@sage.edu
Magen Fortin, OTS: fortim2@sage.edu
Jessica Tarantino, OTS: taranj2@sage.edu
Faculty:
Dayna Maniccia, DrPH, MS; Associate Professor and Department Chair, Interdisciplinary Studies Department: manicd@sage.edu
Deborah Collette: OTD, OTR/L; Associate Professor and Program Director, Occupational Therapy Department colled@sage.edu
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.
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: https://alliant.qualtrics.com/jfe/form/SV_9nRq25gN0WEdb38
Sumaira Gul Mushtaq, M.S., CCC-SLP
Phone: 510-449-2092
E-mail: smushtaq@alliant.edu
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.
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: lori.chapman@national.edu or by phone at: (662) 416-7756.
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/
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:
- Children ages 10 – 16 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
