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.

DATES NAME OF OPPORTUNITY TARGET POPULATION

February 22, 2024 to April 12, 2024.

From the Access Ramp to Equity and Quality: Alberta Teachers’ Experiences of Educating Students who are Deaf/Hard of Hearing

Alberta, Canada
January 15-April 15, 2023 Communication styles of Deaf and Austic individuals Nationwide

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
August 2023 to March 2024 The UNT Department of Audiology and Speech-Language Pathology Is Conducting an Online Confidential Survey to Examine Sports Participation in Children with Hearing Loss International
Oct 2023 - May 1, 2024 Oral Narratives of Bilingual Pediatric Cochlear Implant Users DMV Area - District of Colombia, Maryland, Virginia
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
June 1st 2023 thru December 31 2023 Sports Participation and Nonparticipation in Children with Hearing Loss International, survey written in English
Thru December 2023 Studies for Families with Young Children Rochester, NY and surrounding areas
Thru April 4, 2024 Study on Literacy and Outcomes of Deaf and Hard of Hearing (dhh) Students in Rural Public Schools Nationwide
Actively enrolling until 125 families join the study CHAMPS-DHH: study on a strengths-based parenting support program for families with children who are Deaf or Hard of Hearing 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

Nationwide

 

Parent Research / Survey Opportunities

- Descriptions of Studies -


 

 

From the Access Ramp to Equity & Quality:

Alberta Teachers’ Experiences of Educating Students who are Deaf/Hard of Hearing

In the last century, provincial ministries of education have embraced an inclusive education system for all students. In this century, it is estimated that approximately 85% of Deaf/hard of hearing (DHH) students attend neighbourhood schools. Although classroom teachers are now the primary educators for most DHH students, to my knowledge, only one Canadian study has included classroom teachers as study participants. I am seeking to add teachers’ voices to our understanding of how best to support teachers and DHH students in Alberta.

What are we asking from you?  

SURVEY!  Your opinions and experiences will enable us to better understand how to improve supports and services for teachers and educational opportunities for DHH students in Alberta.  I estimate the survey will take 10 to 20 minutes to complete.  If you have current or recent experience with educating a student who is DHH in your classroom, Please - tell us what you think, through this survey link at: Classroom Teacher Survey

From time to time a skip navigation notice appears. Please click on this and proceed with the survey.

If you are a Teacher of the Deaf/Hard of Hearing serving DHH teachers and students in Alberta, Please - tell us what you think, through our survey link at: Teacher of the Deaf/Hard of Hearing Survey

Please feel free to forward the survey link to others as well.

The surveys close on April 12, 2024.

The plan for this study has been reviewed for its adherence to ethical guidelines and approved by Research Ethics Board 1 at the University of Alberta: Ethics Id# Pro00128138. All data collected will be anonymized and stored securely.

THANK YOU for taking the time to share your voice with us! If you have any questions, concerns or suggestions, please contact Colleen McClure, Doctoral Candidate, Special Education, University of Alberta.  camcclur@ualberta.ca

 


Communication styles of Deaf and Autistic individuals

Research Study: Interpreting for Deaf People with Autism

Participation in this study will require one 30-45 minute interview. During the interview participants will be asked about expierences with interpreters in the medical setting, specificially regarding their autism diagnostic assessment. Participants can be either parents of deaf & autistic children, or adult participants who are deaf and autistic themselves.

Looking for Participants!

Please contact me to participate in a 30-60 minute Zoom interview about your or your child’s experience with interpreters in medical settings. Your information will be treated confidentially. This is part of research conducted for my Masters in Healthcare Interpreting at the National Institute for the Deaf/RIT.

Contact Philena Gordon at pg5943@g.rit.edu

 

 


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 www.otofclinicaltrial.com.

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

[ 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 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.

 

 


UNT Logo

Sports Participation and Nonparticipation in Children with Hearing Loss

We want to collect confidential information from parents/caregivers of children with hearing loss to examine factors that may influence participation and nonparticipation in organized sports. This information will help us to identify ways to better support families of children with hearing loss who are interested in sports participation. The survey will take approximately 5-10 minutes, and participants will not be compensated for completing the survey.

For more information about this research study, please contact the principal investigator, Erin Schafer, Ph.D., CCC/A, at (940) 369-7433 or Erin.Schafer@unt.edu

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Please scan the QR code above to access the survey or go to: https://unt.az1.qualtrics.com/jfe/form/SV_9o5Zzd0uHo2LWNo

 

 


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 

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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…

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:

Contact:

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

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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.

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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

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 (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.

Doctoral Student is doing a study and 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 Flyer |

 

 


UNT logo

Sports Participation and Nonparticipation in Children with Hearing Loss

As a parent/caregiver of a child with hearing loss, you are being asked to take part in a confidential survey to examine sports participation and nonparticipation in children with hearing loss as well as what facilitators and barriers to participation may exist. This information will help us to identify ways to better support families of children with hearing loss who are interested in sports participation. The survey will take approximately 10 minutes, and participants will not be compensated for completing the survey.

For more information about this research study, please contact the principal investigator, Erin Schafer, Ph.D., CCC/A, at (940) 369-7433 or Erin.Schafer@unt.edu

Link to Survey for Parents and Caregivers of Children with Hearing Loss: https://unt.az1.qualtrics.com/jfe/form/SV_9o5Zzd0uHo2LWNo

 

 


RIT Logo

Studies for Families with Young Children

Are you interested in what your baby is learning?

The NTID PLAY Lab and the RIT PAW Lab have in-person studies for families (children 6 months to 8 years of age and adults over age 18) in the Rochester, New York area.  Our studies involve short, fun activities and typically take less than an hour. We have several studies for babies, children, parents, and adults. : If you have, or know somebody, with a baby or child, come to the PLAY Lab for our fun eye tracking studies! We have online and in-person studies. Testing takes about 15 minutes while your baby sits in your lap watching fun videos. We will pay $20 for your 30 minute visit and baby gets a present. We are specifically looking for 4-18 month olds and 4-6 year olds.

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You will be paid for your participation if you are selected for a study. Child participants also receive a gift.  You can learn more about our studies here: NTIDplaylab.com or https://www.rit.edu/ntid/space.

For more information, contact playlab@rit.,edu or visit our website: ntidplaylab.com

Karen Putz, Lab Coordinator.

 


 

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: lori.chapman@national.edu or by phone at: (662) 416-7756.

 

 


 

Champs DHH Logo

CHAMPS-DHH: study on a strengths-based parenting support program for families with children who are Deaf or Hard of Hearing

Researchers from the University of Kentucky and the University of Colorado are enrolling 125 families to help learn if a strengths-based parenting support program, “The Family Check-Up,” is helpful to families with children who are Deaf or Hard of Hearing and use hearing devices. A parent or guardian and their child are involved in the study for up to 1 ½ years and will complete research activities up to two times per year. Families receive up to $150 each year for completing research assessments.

Eligibility:

What does participation involve?

Contact info:

 

[ FLYER }

 

 

 


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: https://prezi.com/view/w1N9DI5BPOSfKoH6jyzc/

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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/

 

 

 

 

 


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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! https://redcap.link/DHHReadingStudy

Contact Us:

 

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