Cystic Fibrosis Patient Registry

Date Added
December 9th, 2002
PRO Number
Pro00120872
Researcher
Patrick Flume

List of Studies


Keywords
Cystic Fibrosis
Summary

The CF Patient Registry is an observational study. It does not involve medical treatments and serves only as an epidemiologic record of demographics, characteristics of disease and treatment, utilization patterns, and clinical outcomes.

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

Human Aortic Tissue Analysis in Health and Disease

Date Added
June 17th, 2008
PRO Number
Pro00125518
Researcher
Jeffrey Jones

List of Studies


Keywords
Cardiovascular
Summary

Patients diagnosed with an enlarged aorta (aneurysm) or separation of the layers of the aorta (dissection) can suffer complications. The purpose of this study is to determine the levels of proteins and their effects on the aortic tissue wall.

Institution
MUSC
Recruitment Contact
Lauren Wakefield
8438765049
wakefila@musc.edu

AALL1131: A Phase III Randomized Trial for Newly Diagnosed High Risk B-Lymphoblastic Leukemia (B-ALL) Including a Stratum Evaluating Dasatinib (IND#73789, NSC#732517) in Patients with Ph-like Tyrosine Kinase Inhibitor (TKI) Sensitive Mutations

Date Added
June 22nd, 2012
PRO Number
Pro00016822
Researcher
Jacqueline Kraveka

List of Studies


Keywords
Adolescents, Cancer, Cancer/Leukemia, Pediatrics
Summary

To collect information about the patient's leukemia and to seek the optimal treatment for children with ALL based on the individual level of risk of the cancer coming back after treatment. The risk groups are defined as a result of recent research conducted by the Children's Oncology Group (COG). We would like to learn if the use of an experimental intrathecal therapy (ITT), which has been given to many people with ALL and has been well tolerated, would be better at preventing relapse in the central nervous system and improve disease outcomes in children with High Risk ALL.

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

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) and Interstitial Lung Disease Prospective Outcomes (ILD-PRO) Registry

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

Remediating Emotion Deficits in PTSD: Probing and Modulating Neurocircuits

Date Added
November 4th, 2014
PRO Number
Pro00038957
Researcher
Lisa McTeague

List of Studies


Keywords
Anxiety, Brain, Depression
Summary

The current investigation uses a brain-based technique, transcranial magnetic stimulation (TMS), which has helped to treat depression, to try to stimulate those brain regions understood to be essential to emotional experience and impaired in PTSD. In summary, the aim is to enhance emotion engagement and regulation and possibly uncover new brain-based interventions that could help ready the brain so an individual with PTSD could then fully engage and thus optimize emotion-focused psychotherapy.

Institution
MUSC
Recruitment Contact
Lisa McTeague
(843) 792-8274
mcteague@musc.edu

Operant Conditioning of Motor Evoked Potential to Transcranial Magnetic Stimulation to Improve Motor Function Recovery after Spinal Cord Injury

Date Added
April 7th, 2015
PRO Number
Pro00042109
Researcher
Aiko Thompson

List of Studies


Keywords
Movement Disorders, Rehabilitation Studies, Spinal Cord
Summary

Over many years, we have learnt that the brain's connections with the spinal cord change in response to injury or training. Because brain-spinal cord (i.e., corticospinal) pathways are very important in movement control, restoring function of these pathways could help to restore useful movement after spinal cord injury (SCI). In this project, we hypothesize that operant conditioning training of the muscle response to non-invasive transcranial magnetic stimulation can strengthen the functional connectivity of corticospinal pathways and thereby alleviate movement problems in people with chronic incomplete SCI. This study will require about 38 visits over the first 3 months, and another 4 visits over an additional 3 months. Each visit will take about an hour.

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

A Phase II Controlled Trial of Allogeneic Mesenchymal Stem Cells for the Treatment of Refractory Lupus

Date Added
June 16th, 2015
PRO Number
Pro00039894
Researcher
Gary Gilkeson

List of Studies


Keywords
Autoimmune disease, Lupus
Summary

The purpose of this study is to evaluate the efficacy and safety of mesenchymal stem cells (MSCs) obtained from umbilical cords for the treatment of adults with systemic lupus erythematosus (SLE). The goal of this study is to determine if patients receiving an MSC infusion plus standard of care respond better than patients receiving a placebo infusion plus standard of care.

Institution
MUSC
Recruitment Contact
Stephanie Dezzutti
843-792-8997
brays@musc.edu



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