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Research Studies

 

Research is a non-negotiable topic in the world of autism. As more research is conducted, more strategies can be provided for those living on the spectrum. Below are some research projects currently underway. If you are interested, please contact the agency directly. 

Children's Mercy Hospital

CMH is doing a study to try to figure out how many calories adolescents with intellectual disabilities eat every day. The best measure of calories is an isotope called doubly labeled water, which measures the calories used by the body. This liquid isotope is made out of hydrogen and oxygen, just like water, and is consumed like a drink. To measure calories a person drinks the isotope, then researchers collect urine samples to measure how quickly the isotope leaves the body, which shows how many calories that person’s body used. However, this measure cost a lot of money, so researchers need to find out if other methods can work just as well. Previous work in adolescents without disabilities found that writing down everything someone eats as well as taking photos of the what they eat, can correctly measure caloric intake. This study is being done to determine if writing down what your child eats as well as taking photos of those meals can correctly determine how many calories adolescents with intellectual disabilities eat every day.

If you are interested in this study, we would come out to collect urine samples from your child 3 times in a 15-day period, we would also ask you and your child to fill out everything you have to eat and drink for 3 days, as well as take photos of those meals.

In return your adolescent would learn how many calories they use every day, and receive $100. The study only last 15 days and does not require any driving.

We will be recruiting through March 2019 so you don’t have to start doing it right away.

If you are interested or would like more information let me know or contact Meredith Dreyer Gillette or Lauren Ptomey, PhD, RD, at lptomey@ku.edu.

Meredith L. Dreyer Gillette, PhD | Pediatric Psychologist

Divisions of Developmental and Behavioral Sciences and Weight Management

Children’s Mercy Kansas City

Associate Professor of Pediatrics

UMKC School of Medicine

P: (816) 302-3009 | F: (816) 302-9977

E: mldreyer@cmh.edu | W: childrensmercy.org

2401 Gillham Road | Kansas City, MO 64108

 

The University of Kansas

Autism Spectrum Disorder Studies

KU has studies of individuals with Autism Spectrum Disorder (ASD) which aim to characterize sensorimotor and cognitive functioning development in ASD. They interpret behavioral measures and measures of brain function and anatomy to examine the neural mechanisms involved in ASD. These studies are open to individuals ages 10 through 25 years old with a diagnosis of ASD, Asperger’s Syndrome, or PDD-NOS.

If you or your child is interested in participating in the ASD study, please fill out this form or contact KU directly via phone (785-864-4461) or email (ndrlab@ku.edu).‚Äč

KU Play Study

We want to hear your experiences to further encourage play for children of all abilities! Our research study’s main objective is to assess parents’ and child providers/educators’ perception on the importance of play and how play-related opportunities are being accessed. The study includes completing a survey (taking approximately 15-20 minutes) with the option of attending a focus group (taking approximately 60 minutes).

To participate you must speak English, residing or practicing in Kansas AND either be: 1) A parent over the age of 18 with a child (under 18) with a special healthcare need(s) OR 2) Child providers/educators: Defined as certified/registered therapists, nurses, doctors/physicians, school professionals who treat or work with families that have a child (under 18) with a special healthcare need(s). A special healthcare need is defined as having a physical, developmental, behavioral, and/or emotional condition that requires additional support beyond peers.

Direct benefits to the subject may include gaining a clearer understanding of the importance and benefits that play skills have on a child’s development and well-being. Findings will be disseminated regarding play-related opportunities and perception of play. It is possible that parents or child providers/educators may seek recommendations for play resources or other developmental supports. In this case, the faculty supervisors (a licensed and certified speech-language pathologist and occupational therapist) will counsel the caregiver or provider to provide them with this information. Another benefit is that participants can voice their opinions.

There is minimal risk for participating in this study, however, it is possible that some of the questions from the parent survey and focus group will elicit emotional responses or psychological stress because the parents will be reflecting on medical situations and early development involving their young children.

Please contact either graduate research assistants, Alexandra at ahicks5@kumc.edu or Marie at mleathers@kumc.edu if you have any questions or want to know more about this study.

Thank you for your time and consideration,

Alexandra Hicks, Master of Occupational Therapy Student

Marie Leathers, Master of Occupational Therapy Student

Joshuaa Allison-Burbank, MA CCC-SLP Evan Dean, PhD OTR/L

The Kansas University Center on Developmental Disabilities

SPARK

SPARK—a landmark autism research project—aims to make important progress possible. SPARK stands for ‘Simons Foundation Powering Autism Research for Knowledge,’ and the mission is simple: they want to speed up research and advance our understanding of autism to help improve lives. If you or your child has a professional diagnosis of autism spectrum disorder, learn more about SPARK here. 

SPARK works with research partners from all over the world to engage families and adults with autism in research studies. All of the studies are evaluated for scientific merit, and a SPARK scientific committee approves them.

SPARK matches participants with research studies based on characteristics such as age, diagnosis, medical history, location and more. Some of these studies are online, and some are in person.

SPARK does not share any information with researchers until participants give their permission. Participants in SPARK are always in control.