Clinical and laboratory studies to determine the causes of neurological disease in adults and children

Date Added
September 15th, 2020
PRO Number
Pro00102718
Researcher
Catherine Ziats

List of Studies

Keywords
Alzheimers, Autism, Dementia, Epilepsy, Mental Health, Multiple Sclerosis, Parkinsons
Summary

Neurological diseases are the leading cause of disability worldwide and a major contributor to health problems in children and adults. As the majority of these conditions result in lifelong disabilities, the implications for the family and for society is significant.

A significant number of adult and childhood neurological diseases have a genetic component and are caused by changes in our DNA and/or RNA leading to functional changes in the central nervous system. However, for many patients afflicted with these disorders, traditional genetic testing does not identify a clear genetic cause. The goal of this study will be to use newer genetic techniques to evaluate patients and families with neurological disorders to better understand the genetic basis of the disease.

Institution
Self Regional
Recruitment Contact
Catherine Ziats
8642507944
cziats@ggc.org

Tele-PCIT: Initial Examination of Internet Delivered PCIT for Young Children with Autism

Date Added
May 31st, 2020
PRO Number
Pro00099995
Researcher
Laura Carpenter

List of Studies

Keywords
Autism
Summary

The purpose of this research study is to evaluate Parent Child Interaction Therapy (PCIT) delivered via tele-health for young children with autism spectrum disorder (ASD) and disruptive behavior problems. Participants will go through a screening to determine eligibility. Once screening is complete, participants will complete a pre-therapy assessment in clinic, followed by 10 telehealth sessions one time per week. Participants will then be asked to complete an in-person post-therapy assessment and follow-up questionnaires will be re-administered 3 months following the completion of therapy.

Institution
MUSC
Recruitment Contact
Rosmary Ros-Demarize
8438761255
rosr@musc.edu

EXAMINING BARRIERS TO EVIDENCE-BASED TREATMENTS FOR DISRUPTIVE BEHAVIOR IN YOUNG CHILDREN WITH ASD

Date Added
December 10th, 2019
PRO Number
Pro00095184
Researcher
Rosmary Ros-Demarize

List of Studies

Keywords
Autism
Summary

The current study investigates how available parenting interventions are for families of young children with ASD and how parenting practices influence participation with these interventions.

Institution
MUSC
Recruitment Contact
Rosmary Ros-Demarize
843-876-1255
rosr@musc.edu

PARENTAL ATTITUDES SURROUNDING DIAGNOSIS DISCLOSURE FOR YOUTH WITH AUTISM SPECTRUM DISORDER AND OPENNESS IN A PSYCHOEDUCATIONAL INTERVENTION

Date Added
November 27th, 2019
PRO Number
Pro00094917
Researcher
Rosmary Ros-Demarize

List of Studies

Keywords
Autism
Summary

The current study will investigate the experiences of parents with children with ASD in disclosing diagnosis and their opinions on a brief intervention to aid families with this process.

Institution
MUSC
Recruitment Contact
Rosmary Ros-Demarize
843-876-1255
rosr@musc.edu

ASSESSING ATTITUDES AND IMPACTS OF DIAGNOSIS DISCLOSURE FOR INDEPENDENT ADULTS WITH AUTISM SPECTRUM DISORDER

Date Added
November 27th, 2019
PRO Number
Pro00094892
Researcher
Rosmary Ros-Demarize

List of Studies

Keywords
Autism
Summary

The current study will investigate the experiences of adults with ASD in learning about diagnosis and their opinions on a brief intervention to aid families with this process.

Institution
MUSC
Recruitment Contact
Rosmary Ros-Demarize
843-876-1255
rosr@musc.edu

Odor Disturbances: Clinical Care Registry

Date Added
September 26th, 2018
PRO Number
Pro00080333
Researcher
Thomas Uhde

List of Studies

Keywords
ADD/ADHD, Adolescents, Aging, Allergy, Alzheimers, Anxiety, Asthma, Autism, Autoimmune disease, Central Nervous System, Chronic Fatigue, Depression, Environmental Factors, Fibromyalgia, Inflammation, Memory Loss, Nervous System, Parkinsons, Psychiatry
Summary

Candidates for this study may or may not report disturbances in odor perception as their primary reason for seeking treatment at MUSC. This study is designed to collect long term, observational data from patients who are being treated with routine clinical care in health clinics at MUSC. Data from clinical questionnaires will be de-identified and stored in a database.

Institution
MUSC
Recruitment Contact
Richard Simmons
843-792-7439
simmr@musc.edu

Trials and ReseArch NetworkS FOR More South Carolina (TRANSFORM SC) Child Health Recruitment Registry

Date Added
June 9th, 2017
PRO Number
Pro00063569
Researcher
Andrew Atz

List of Studies

Keywords
Asthma, Autism, Children's Health, Diabetes, Obesity
Summary

The TRANSFORM network is focused on improving child health outcomes in SC through research on conditions of highest priority for future generations. These include conditions like asthma, autism, diabetes, obesity and early childhood outcomes. To accelerate research study recruitment activities for future projects that TRANSFORM sites may participate in, the TRANSFORM network sites will create a research recruitment registry of families interested in volunteering for research. Participants will enter their own as well as their child(ren)'s information into the electronic registry which can be used to identify people to contact for future studies.

Institution
MUSC
Recruitment Contact
Mary Freeman
843-792-5762
freemanme@musc.edu

Language Development in Teens and Young Adults with Fragile X Syndrome or Autism

Date Added
January 25th, 2012
PRO Number
Pro00014212
Researcher
Jessica Klusek

List of Studies

Keywords
Adolescents, Autism, Healthy Volunteer Studies, Language
Summary

We are recruiting mothers of children with typical development, autism, or fragile X syndrome.

This study focuses on parental experiences and normal individual differences that may influence child language development. The broader goal of the study is to understand which family experiences support language development in children who have neurodevelopmental disabilities, such as autism. We are recruiting families who have children who are typically developing, have autism, or have fragile X syndrome.

Institution
USC
Recruitment Contact
Jessica Klusek
803 777 5676
klusek@mailbox.sc.edu



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