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

ANBL12P1: Pilot Study Using Myeloablative Busulfan/Melphalan (BuMel) Consolidation Following Induction Chemotherapy for Patients with Newly Diagnosed High-Risk Neuroblastoma

Date Added
July 17th, 2013
PRO Number
Pro00026760
Researcher
Jacqueline Kraveka

List of Studies


Keywords
Adolescents, Cancer, Pediatrics
Summary

the United States, it is standard treatment for patients with high-risk neuroblastoma (NBL) to receive the drugs carboplatin, etoposide and melphalan (CEM) as the preparative regimen in Consolidation therapy prior to Autologous Stem Cell Transplant (ASCT). BuMel Consolidation therapy has recently been studied in patients with high-risk NBL in some European countries. The findings from those studies indicate that the use of BuMel prior to ASCT may be linked to an increase in the survival rate for patients when compared to CEM. Those studies also indicate that the chance of the disease coming back (a relapse) may be lower among the patients who received BuMel Consolidation therapy. In North America the BuMel combination is considered experimental. In this study, researchers want to find out if a combination of busulfan and melphalan (BuMel) can be given as Consolidation therapy prior to ASCT for subjects with newly diagnosed high-risk NBL. The main goal of this study is to find out what effects, good and/or bad, a BuMel preparative regimen given before ASCT has on people with newly diagnosed high-risk NBL.

Institution
MUSC
Recruitment Contact
Jacqueline Kraveka
843-792-2957
kravekjm@musc.edu

A Post-Market Domestic (US) and International Data Collection to Assess the Optetrak® Knee Stystem.

Date Added
February 18th, 2014
PRO Number
Pro00030785
Researcher
Richard Friedman

List of Studies


Keywords
Joint, Pain, Surgery
Summary

The study will collect data to further affirm the safety and effectiveness of the Optetrak® Knee System product lines. Data will be collected in order to provide post-market subjective and objective evidednce of safety and effectivness. Data may be analyzed to support future presentation and publication of the Optetrak® Knee Systems and will be made available in the event Exactech is required to provide clinical evidence of the post market outcomes of the Optetrak Knee devices.

Institution
MUSC
Recruitment Contact
Lisa Mock
843-876-2211
mockl@musc.edu

An Open Label, Multi-Center, Retrospective and Prospective Evaluation of Shoulder Arthroplasty Clinical and Radiographic Outcomes

Date Added
February 18th, 2014
PRO Number
Pro00030914
Researcher
Richard Friedman

List of Studies


Keywords
Joint, Pain, Surgery
Summary

The purpose of this study is to collect and evaluate clinical and radiographic outcomes data on patients who have undergone, or will undergo, shoulder replacement surgery. Patients who receive a device from the Equinoxe® Shoulder System, manufactured and distributed by Exactech, Inc as well as patients who receive a device from another shoulder arthroplasty system may be included in this study.

Institution
MUSC
Recruitment Contact
Lisa Mock
843-876-2211
mockl@musc.edu

Idiopathic Pulmonary Fibrosis Prospective Outcomes Registry (IPF-PRO)

Date Added
May 13th, 2014
PRO Number
Pro00033910
Researcher
Timothy Whelan

List of Studies


Keywords
Interstitial Lung Disease (ILD)
Summary

The purpose of this research registry is to better understand the natural history of Idiopathic Pulmonary Fibrosis and current practice patterns. The IPF-PRO registry will be used to collect data and biological samples that will support future research studies by identifying disease biomarkers for IPF. Through these studies, researchers hope to find new ways to detect, treat, and maybe prevent or cure health problems. Some of these studies may be about how genes affect health and disease, or how a person's genes affect their response to a treatment. Some of these studies may lead to new products, such as drugs or tests for diseases. We are asking you to let us collect and store some of your blood and health information so they might be used in these kinds of future studies.

If you are newly diagnosed with IPF and are eligible for participation in IPF-PRO, you will be asked to sign a consent form to become enrolled if you agree to be in this registry. At enrollment a member of MUSC research staff will collect information from you and about your medical history and medical care, as well as information about the types of health insurance (public or private) that you have. As part of your participation in this registry, you will be required to sign a medical release form giving permission for your medical records to be reviewed for the purposes of data collection for the registry. This is an observational registry which means you will not receive any investigational treatments or investigational drugs, and only minimally invasive procedures will be performed (blood draws) at scheduled clinic visits. In addition to the face to face visits for self-administered participant reported questionnaires and blood collection, at roughly 6-month intervals, sites will review the participant's medical records. Your disease management and treatment decisions will be determined by you and your health care professional. Subjects will be followed until the last enrolled subject has been followed for 3 years up to a maximum of 5 years.

Institution
MUSC
Recruitment Contact
Zerlinna Teague
8437920965
recruitment@musc.edu

Attenuation of Inflammatory Response in Progressive Neurodegeneration in Parkinson's disease

Date Added
May 29th, 2014
PRO Number
Pro00033613
Researcher
Narendra Banik

List of Studies


Keywords
Inflammation, Movement Disorders, Parkinsons
Summary

This is an exploratory study and the information obtained may lead to new findings regarding the inflammatory and neurodegenerative mechanisms in the progression of PD and help to develop new drugs to halt the disease progression. The study simply involves a one time blood draw.

Institution
MUSC
Recruitment Contact
Christina Vaughan
792-7262
jenkisho@musc.edu

MUSC Pulmonary Biorepository

Date Added
December 16th, 2014
PRO Number
Pro00039387
Researcher
Charlie Strange

List of Studies


Keywords
Genetics, Liver, Lung, Pulmonary
Summary

The purpose of the MUSC Pulmonary Biorepository is to collect and store samples linked to medical and other information from individuals with pulmonary disease as well as healthy controls.

In combination with the clinical data and other approved research studies (that may recruit for and/or utilize samples of the biorepository) this sample repository will provide for uniform, longitudinal, complete and accurate data that can be organized and clinically correlated at the time of sample donation, with longitudinal testing possible as part of future study. Samples will be linked to each participant's unique ID, though will be deidentified and coded for use in future research and subsequent publications with pulmonary disease and control patients.

Institution
MUSC
Recruitment Contact
Mary Hayden
843-792-8438
blantonm@musc.edu

Operant Conditioning of Spinal Reflexes to Improve Motor Function Recovery after Spinal Cord Injury

Date Added
April 7th, 2015
PRO Number
Pro00042082
Researcher
Aiko Thompson

List of Studies


Keywords
Nervous System, Rehabilitation Studies, Spinal Cord
Summary

Reflexes are important parts of our movements. When reflexes are not working well, movements are clumsy or even impossible. After spinal cord injury, reflex responses may change. Researchers have found that people can learn to increase or decrease a reflex response with training. Recently, we have found that rats with spinal cord injuries can walk better after they are trained to change a spinal reflex. Thus, learning to change a reflex response may help people recover after a nervous system injury. In this study, we aim to examine whether learning to change a spinal reflex through operant conditioning training can improve movement function recovery after spinal cord injury.

Institution
MUSC
Recruitment Contact
Blair Dellenbach
843-792-6313
stecb@musc.edu

VA Stroke Rehabilitation Research Database

Date Added
May 20th, 2015
PRO Number
Pro00043107
Researcher
Brian Cence

List of Studies

Keywords
Military, Rehabilitation Studies, Stroke
Summary

The aim of this study is to gather information about veterans at the Ralph H. Johnson Veterans Medical Center (RHJ-VAMC) who've experienced a stroke and are interested in participating in rehabilitation research.

VA principal investigators at the Center for Rehabilitation Research in Neurologic Conditions (CRRNC) conduct stroke rehabilitation research for individuals. CRRNC include laboratories that investigate and assess upper extremity motor function, neuro-stimulation, communication and swallowing, locomotor energetics, locomotor and rehabilitation, and motor performance functions.

Participants will be asked to come to the CRRNC located at the Medical University of South Carolina (77 President Street, Charleston, South Carolina) and fill out a simple screening form with study personnel. Participants may be contacted in the future for qualifying studies.

Institution
MUSC
Recruitment Contact
Brian Cence
843-792-2668
cence@musc.edu

Analysis of genetic variant and treatment based variations in infants at risk for retinopathy of prematurity (ROP)

Date Added
July 31st, 2015
PRO Number
Pro00041164
Researcher
Lakshmi Katikaneni

List of Studies


Keywords
Children's Health, Genetics, Infant, Vision/ Eye
Summary

Infants born early who are in the neonatal intensive care unit will be included if they meet national guidelines for retinopathy of prematurity (ROP) screening exams. Informed consent will be given to the parent(s) or legal guardians. 1.5-2 ml of blood will be drawn from a vein when the child is enrolled in the study and may be drawn again if the child requires treatment of eye disease. A cheek swab will also be obtained. These biologic samples will be shipped overnight to the University of Utah for genetic analysis. Analysis will determine if a change in gene expression causes retinopathy of prematurity. Infants enrolled in the study will be followed clinically per established ROP screening guidelines. They will not require additional study exams.

Institution
MUSC
Recruitment Contact
Kinsey Shirer
843-792-2799
evanssa@musc.edu



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