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
THE HUMAN TRISOME PROJECT
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
- Realistic strategies: Learn simple, healthy routines for eating and moving at home.
- Created with care: Designed by experts and families who understand your journey.
- Community impact: Be one of 38 families helping shape a program that makes a difference.
Learning to Drum in Children with Down syndrome!
Drum up discovery in an exciting new study! Your child will complete a few different activities, including drumming, while we safely measure their brain waves. Trained lab members will put a non-invasive cap on your child’s head that will allow us to examine underlying brain activity.
Your child will receive 8 weeks of drumming lessons, which will begin after the first or second visit to the lab. We are looking for participants between the ages of 7 and 12 that have been diagnosed with Down syndrome.
Hands-On Play Lab
The Hands-On Play Lab at Vanderbilt University is recruiting participants for a fun new study! Our study aims to understand more about how children’s social skills and peer relationships change as they work together towards a common goal.
We are looking for children in 1st through 5th grade, or around 6-11 years old. The study would involve five 3-hour long sessions of a movie-making club where your child works with their peers to create a short film under the guidance of our trained lab members. The study would take place in the morning, and children would attend regular JCC camp programming in the afternoon! If you are interested in learning more about the study, please feel free to contact us at
vuhandsonplaylab@gmail.com or call (615) 343-1079. Fill out our interest form here and we will contact you with registration details:
Atopic Dermatitis and/or Alopecia Areata , Icahn School of Medicine at Mount Sinai is conducting a single-center, open-label, basket Phase 2b trial that will enroll Down Syndrome subjects with at least one inflammatory skin condition (Atopic Dermatitis and/or Alopecia Areata). Patients will receive Abrocitinib 100 mg daily for 12 weeks. Location - Mount Sinai, NYC. Ages - over age 12. Contact:
giselle.singer@mssm.edu
Caregiver and Self-Advocate Perspectives on Research Design and Information (PARDI), Cincinnati Children’s Hospital Medical Center - This study aims to understand caregiver and self-advocate perceptions on participating in research and use outcomes from this study to inform the design and development of future research that would allow for stronger engagement and inclusion of individuals with Down syndrome. Location - virtual. Ages - open to caregivers or self-advocates, 18 years or older in English and Spanish. Contact:
amanda.white@cchmc.org
Caregiver experiences with understanding trauma-informed care, Eastern Michigan University. This study also aims to assess families’ current understanding of trauma-informed care and perspectives on a new trauma-informed care protocol designed for pediatric medical genetics care settings. Location - virtual. Ages - open to caregivers of a child under the age of 18 with a genetic condition. Contact:
star_researchlab@emich.edu
Infant Movement Study, by Boston University's Infant Communication Lab is looking to better understand everyday movements and activities of infants with Down syndrome. Location - virtual. Ages - under 12 months. Contact:
buicl.studies@gmail.com
Infantile Spasms, Boston Children's Hospital is conducting a research study to understand whether families of individuals with Down syndrome have received education about the risk of infantile spasms from healthcare providers. The study also seeks to identify if there are geographic or demographic differences in who receives this information. This is a short, online survey for adult caregivers of people with Down syndrome across the United States. Location - virtual. Ages - parents/caregivers of individuals with Down syndrome of all ages. Contact:
daniel.loizzo@childrens.harvard.edu
Neurocognitive and quality of life outcomes in individuals with Down syndrome and acute lymphoblastic leukemia, St Jude is recruiting caregivers of individuals with Down syndrome and no history of childhood cancer. Location - virtual. Ages - individuals with Down syndrome ages 1 to 34; however, we are most interested in caregivers of younger children at this time (age 5 and under). Contact:
DSCOG2@stjude.org or
1-833-591-0724
Neural and cognitive development in memory, Boston College. This intervention study tests the efficacy of a smartphone application that has been shown to improve memory in other populations. Location - virtual. Ages - 15 to 35. Contact:
learningmemory@bc.edu
Oxygen Therapy in Children and Adolescents with Down Syndrome and Obstructive Sleep Apnea,
Cincinnati Children’s Hospital Medical Center. Location
-Hosted by several medical centers across the U.S. Ages - recruiting ages 5 to 17 years old who are diagnosed with OSA and have not been successful with a CPAP. Contact:
suzanna.hicks@cchmc.org
Parent Survey to Develop a Measure of Maladaptive Behavior for Down Syndrome (BIDS-Phase 2), Cincinnati Children’s Hospital, Department of Developmental and Behavioral Pediatrics. Location - virtual. Ages - open to children with Down syndrome ages 2 to 17 years old. Contact:
dsresearch@cchmc.org
Parenting, Patience & Disability Study, Baylor University. This study explores how parents experience and understand patience while raising children with developmental disabilities. Location - virtual. Ages - caregivers of 11 to 17 years old. Contact:
patience_disability@baylor.edu.
Speech Accessibility Project, University of Illinois, to make voice recognition technology accessible to everyone. Location - virtual, open to US and Puerto Rico residents (excluding Illinois, Texas and Washington). Ages - people 18+ with Down Syndrome, Autism, Stroke, Aphasia, Cerebral Palsy, ALS, or PLS. Contact:
speechaccessibility@beckman.illinois.edu
Family Quality of Life Survey for Parents of Elementary-Aged Children with Down Syndrome This study examines family quality of life among parents and caregivers of individuals with Down syndrome. Must be actively caregiving, live in the United States, and be a parent or caregiver. Register
here To learn more contact Zineb Moumene at
zmoumen@g.clemson.edu