Research is a key component for making new discoveries and improving the lives of people with disabilities. It can also provide participants with insight and support regarding their conditions, especially when there is a gap in services. Here are a few studies that may be of interest
Limb Difference Research Study
Study Description
The Children’s Healthcare, Illness, Legacy, and Loss (CHILL) Lab at Vanderbilt University is currently conducting a study to better understand the experiences, needs, and psychosocial development of children with limb differences and their families.
We are looking for children with limb difference and a parent/guardian. The aims of the study are to evaluate the functioning of children with limb differences and their families, to examine their support needs, and to better understand their lived experience.
By exploring these research questions, we hope to improve the quality of resources and interventions for children who may need it.
Participation Criteria
We are looking for children ages 5-17 who have a congenital or acquired limb difference, are proficient in the English language, and did not acquire their limb difference in the last three months.
Study Tasks or Visits
There are two parts to this study – a one-time series of electronic surveys and an optional interview that participants can choose to complete at their convenience via phone or zoom.
This study consists of online surveys for your child to complete as well as a few additional surveys for you to complete. Your child will answer questions about friendship, emotional support, body appreciation, quality of life, and self-efficacy. You will complete surveys about your experience with support services and family life. After completing the surveys, you can choose to provide your contact information if you and/or your child are interested in doing a phone or videoconferencing interview with a member of the research team to share more. If you choose to do the interview, it will be scheduled at your convenience. Topics discussed may include what it is like to have a limb difference, how it influences self-perceptions, and which services are most helpful in navigating challenges. The participant will direct the course of the conversation and has control over what they would like to talk about. This interview will be audio-recorded. Audio files will be transcribed manually by the KSP. All transcript files will be kept in a secure one drive folder that only the KSP can access. Once the audio file has been completely transcribed the transcript will be de-identified and the audio transcript will be destroyed.
Study Length
The surveys should take each of you about 20 to 30 minutes. Interview will take no more than 60 minutes and can be much shorter. We can adjust the timing and course of the interview to maximize your child’s comfort, and you can stop at any time.
Compensation
The benefits you might get from being in this study include helping researchers understand the subjective experiences of children with limb differences, which will be used to inform future studies and create family resources and interventions. However, no payment is offered for this study.
Contact Information
The Children’s Healthcare, Illness, Legacy, and Loss (CHILL) Lab at Vanderbilt University
Email: jessika.boles.1@vanderbilt.edu, alexander.c.pilloff@vanderbilt.edu
Communication and Play Intervention for Young Children with Autism Study
Participant Criteria
Children with autism between the ages of 16 and 36 months and their parents. Participants attend weekly intervention sessions and complete questionnaires.
Description
We invite parents/caregivers and their child with autism to participate in an intervention study to support children’s imitation, communication, and social skill development. Children receive assessments of their developmental and social communication skills and participate in weekly play-based intervention sessions with a therapist. Families receive feedback on their child’s development and can receive a written report with results and recommendations, as well as intervention sessions, at no cost.
Participants will be asked to:
- Complete questionnaires about themselves and their child.
- Child receives assessments of their developmental and social communication skills.
- Child receives ~3 months of intervention; intervention sessions occur 2-3x per week (sessions 40-60 minutes)
- Attend study visits before and after the intervention program
- Child completes a movie- watching activity
Compensation
Up to $150 in gift cards. Child receives intervention sessions at no cost. Results of developmental testing and assessment for autism will be provided at no cost. Families can receive a written report with results, recommendations, and referrals at no cost.
Visit Requirements
2-3 intervention sessions per week (40-60 minute sessions) for up to ~30 sessions. Study visits before and after the intervention program
Contact Information socialmusicresearch@vumc.org or 615-576-0320
Principal Investigator: Miriam Lense, Ph.D
Changes to Swallowing Function in Aging and Alzheimer’s Disease Study
Purpose:
This research study is investigating whether people with Alzheimer’s disease experience more changes to swallowing than their healthy age-matched peers. The prevalence of swallowing impairments in moderate-severe Alzheimer’s Disease is high, but few studies have examined swallowing problems in people with Alzheimer’s Disease across disease severity. The overall objective of this study is to evaluate swallowing function in adults with and without Alzheimer’s disease. We will also be involving the primary caregivers of individuals with Alzheimer’s who are enrolled in the study to better understand the impact of swallowing impairments on the primary caregivers of those with Alzheimer’s Disease.
- This study will involve one in-person research visit to our lab at Vanderbilt University Medical Center that will last approximately 1-1.5 hours and will consist of a screening, cough testing, swallow function testing, assessments of hand grip and tongue strength, and completion of questionnaires. Caregivers of those with Alzheimer’s disease will also complete questionnaires at this initial visit.
Eligibility:
1) Participant should be an adult ≥60 years old
2) EITHER be a healthy adult
a. No prior history of neurological or respiratory diseases
b. No history of swallowing impairments
c. No history of head and neck surgery, cancer, or radiation to the head or neck.
3) OR be diagnosed with Alzheimer’s disease
a. Have the ability to consume food and/or liquid by mouth
b. Able to follow basic instructions
c. No prior history of other neurological or respiratory diseases
d. No history of head and neck surgery, cancer, or radiation to the head or neck.
e. Be willing to undergo testing procedures and complete questionnaires
Study Design:
Observational Cross Sectional
Location: Vanderbilt University Medical Center 1215 21st Ave. S. Medical Center East, Room 10260 Nashville, TN 37232
More Details:
Study contact: Dr. Cara Donohue, Ph.D. CCC-SLP
Cara.donohue@vumc.org
Irad.lab@vumc.org