Parent Survey of Literacy Skills in Children with Intellectual and Developmental Disabilities
If you are a parent of a child with an intellectual or developmental disability between 6 and 17 years of age, you are invited to participate in an online survey conducted by Dr. Audra Sterling’s Research in Developmental Disabilities Language Lab at the Waisman Center at the University of Wisconsin – Madison.
The purpose of this study is to learn more about the literacy development of children with intellectual and developmental disabilities. If you decide that you would like to
participate, we will ask you to complete a short survey including questions about your
child’s literacy skills and your home literacy practices.
If you are interested in this study, please click on the link below.
https://uwmadison.co1.qualtrics.com/jfe/form/SV_eRwoD4ZVhZ2C5rT
The Accessible Worship project at Vanderbilt University is inviting people with disabilities in Middle Tennessee to share their experiences and recommendations on how churches can enhance the accessibility of their worship practices. Be part of a new research project exploring what it means to design worship services in ways that support the presence and participation of every member—with and without disabilities. The goal of our project is to equip and encourage churches to be places of inclusion and belonging for people with disabilities and their families. Your voice is needed!
To participate, you must:
Have a disability
Attend a local church (or desire to do so)
Be at least 18 years old
Live in Middle Tennessee
To learn more, visit www.accessibleworship.org or email Erik Carter, Professor of Special Education at Vanderbilt University, at accessibleworship@vanderbilt.edu.
TEIS to Preschool Family Survey (3 to 5 Years Old)
If you have a child ages 3 - 5 who RECENTLY (in the past 3 years), moved from TEIS (Tennessee Early Intervention Services) to preschool or an early education program, STEP, Inc. would love your feedback to learn what helped you and your child feel prepared during this time of transition, as well as any challenges you experienced.
The information you provide by completing this brief 8-minute survey will be used to assist the Tennessee Department of Education and STEP, Inc. to improve early education services for children with disabilities and provided needed information to families.
https://www.surveymonkey.com/r/TEISfamilyinput
All answers are confidential.
Infant Brain Imaging Study: Brain Development in Down Syndrome
The study’s goal is to increase our understanding of how the brain is affected in infants with and without Down syndrome. This may in turn provide clues that could eventually help identify therapeutic targets for intervention for individuals with Down syndrome. Infants with Down syndrome between the ages of birth to 6-months-old. Expectant parents encouraged to contact us. Also recruiting typically developing infants between the ages of birth to 6-months-old. Eligible infants and parents will: Travel to St. Louis when babies are 6-months, 12-months, and 24-months-old, Infants complete developmental testing and MRI scan, Reimbursement for study related
expenses and $100 compensation per visit for assessments and MRI scans. To enroll or obtain additional information, please call Lisa Flake at 888-845-6786 or e-mail:
IBIS@wustl.edu
BRAIN DEVELOPMENT STUDY IN SCHOOL AGE CHILDREN WITH DOWN SYNDROME
Researchers in the IBIS Network are recruiting male and female children with a diagnosis of Down syndrome between 7-11 years of age for a new research study to examine brain development. The goal of our study is to increase our understanding of how the brain is affected in children with Down syndrome. This may in turn provide clues that could eventually help identify therapeutic targets for interventions for individuals with Down syndrome. Requires travel to nearest IBIS location with reimbursement for travel and related expenses, Mock MRI training to help
children learn to lay still in the scanner without sedation, behavioral
assessments and an MRI scan at no cost. TO LEARN MORE CONTACT US: ibisnetwork@gmail.com
AAC Surveys
The purpose of the study is to gather information on the perspectives of the family and self-advocate on: (a) the recommendation process of AAC services, supports, and systems; (b) the system selection process; and (c) the training and supports provided post system selection. By gathering information and variables that lead to positive and negative experience and outcomes of self-advocates and their families or caregivers, we hope to outline key elements to minimize experiences that may be contributing to high levels of device abandonment for professionals. Self Advocate Survey Link- https://redcap.vanderbilt.edu/surveys/?s=FRR4WT9CKJ
Parent Survey Link-
https://redcap.vanderbilt.edu/surveys/?s=C3J3MH4MXT
Katie Clouse, Vanderbilt University, M.Ed Special Education Student
Verb learning in children and adolescents with Down syndrome
The Child Language and Literacy Lab (PI: Dr. Melanie C. Schuele) is continuing a research study on verb learning in children and adolescents with Down syndrome. The study involves completing a hearing screening, speech-language evaluation, and word-learning task. The study consists of two visits that take place at Vanderbilt for families of children with Down syndrome with the age range of 7 to 16 years old.
Designed to be the largest and most comprehensive study of its kind, The Human Trisome Project will help us understand why individuals with Down syndrome (trisomy 21) are protected from some medical conditions, such as cancer, while highly predisposed to others, such as Alzheimer's disease. This research will serve first and foremost the population with Down syndrome, but also the millions of individuals without Down syndrome who are affected by the many medical conditions modulated by trisomy 21.
PIXI: Parent and Infant Inter(X)action Intervention
Our team is inviting families to engage in a research study to help us better understand the needs of families and infants with neurogenetic conditions. Participants will receive 20 weekly early intervention support. Please contact us if you have a child under the age of 18 months with a neurogenetic condition. We are especially interested in: Prader-Willi syndrome, Down syndrome, Angelman syndrome, 22q deletion syndrome (DiGeorge), Fragile X syndrome, & Dravet syndrome. Participation includes Weekly virtual visits (1 hour, via Zoom), parent coaching on ways to support
your child in play and daily routines, answering questions about your child’s development and your
experiences. Email Sam Scott at Sjscott@rti.org
HomeGrown Study
The HomeGrown study team is looking for families of children with Down syndrome (ages 2–6) to test our online program designed to support lifelong well-being at home.
Research-based support: An evidence-based program for families of young children with Down syndrome. Note: this is a research study, not treatment.
Take part from home and get practical tools, videos, and expert support — all designed to help your child grow strong and thrive.
Complete our interest survey to learn more about joining the HomeGrown community! https://unc.az1.qualtrics.com/jfe/form/SV_08SDpvZGvm5uUdM
To access this resource, please click on this link.