Odor Disturbances: Clinical Care Registry Save

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

Translating an Evidence-based Urban Asthma Program for Rural Adolescents: Testing Its Effectiveness & Cost-effectiveness and Understanding Implementation Factors Save

Date Added
August 1st, 2017
PRO Number
Pro00069047
Researcher
Phillippe Cunningham
Keywords
Adolescents, Asthma, Education
Summary

Asthma has high morbidity and mortality among adolescents and among youth from rural communities, both of whom are seldom included in asthma intervention research. This study will test the effectiveness and cost-effectiveness of high school-based intervention delivered by Community Health Workers (CHWs) to rural adolescents with uncontrolled asthma, and will examine factors associated with delivery of the intervention.

Institution
MUSC
Recruitment Contact
Phillippe Cunningham
843-876-1800
cunninpb@musc.edu

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

Date Added
June 9th, 2017
PRO Number
Pro00063569
Researcher
Andrew Atz
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
Sarah Newman-Norlund
803-216-3377
Sarah.Newman-Norlund@uscmed.sc.edu

Alpha-1 Foundation Clinical Resource Center (CRC) Research Registry Save

Date Added
November 18th, 2014
PRO Number
Pro00026071
Researcher
Charlie Strange
Keywords
Asthma, Breathing, Environmental Factors, Genetics, Liver, Lung, Pulmonary, Rare Diseases, Shortness of Breath
Summary

The purpose of the Alpha-1 Foundation Clinical Resource Center (CRC) Research Registry is to collect and store medical information from individuals with alpha-1 antitrypsin deficiency (AATD or Alpha-1) or individuals that carry a deficient Alpha-1 gene. The Registry will collect medical information on your disease and diagnosis. This information will include family history, lung and liver symptoms, and exposure to cigarette smoke, dusts and fumes.The goal of this project is to obtain and share information that defines the natural history of alpha-1 antitrypsin deficiency. Biological samples from either blood or tissue may be collected and stored as part of this research. This project will assemble a library of these biological samples, some of which will be saved at MUSC.

Institution
MUSC
Recruitment Contact
Eryn Varano
877-886-2383
alphaone@musc.edu

Alpha-1 Coded Testing Study (Pilot ACT Study) Save

Date Added
October 5th, 2009
IRB Number
9556
Researcher
Charlie Strange
Keywords
Asthma, Breathing, Liver, Lung, Pulmonary, Rare Diseases, Shortness of Breath
Summary

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a hereditary condition that is passed on from parents to their children through genes. This condition may result in serious lung disease in adults and/or liver disease in infants, children and adults.
Alpha-1 occurs when there is a severe lack of a protein in the blood called alpha-1 antitrypsin (AAT) that is mainly produced by the liver. The main function of AAT is to protect the lungs from inflammation caused by infection and inhaled irritants such as tobacco smoke.
The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a build up of abnormal AAT in the liver that can cause liver disease. Finding out the test results early may affect the onset and progression of the disease.

The Alpha-1 Coded Testing (ACT) Study offers free and confidential finger stick testing for Alpha-1 Antitrypsin Deficiency. The test can be completed at home and results are mailed to the participant's home. This test is available through a research study, the Alpha-1 Coded Testing (ACT) Study. The Study investigates people's thoughts and feelings about the risks and benefits associated with learning genetic information. Anyone over age 18 can request to be tested. Participants or the participant's guardian must sign a consent form, fill in a questionnaire, and allow for recontact in the future. Full details are available in the consent form.

Institution
MUSC
Recruitment Contact
Laura Schwarz
843-792-0260 or 1-877-886-2383
alphaone@musc.edu

Alpha-1 Foundation Registry Save

Date Added
October 5th, 2009
IRB Number
9059
Researcher
Charlie Strange
Keywords
Asthma, Breathing, Liver, Lung, Pulmonary, Rare Diseases, Shortness of Breath
Summary

The Alpha-1 Research Registry is a confidential database of individuals with Alpha-1 Antitrypsin Deficiency (Alpha-1) or a carrier phenotype. Alpha-1 is a genetic disorder associated with chronic obstructive pulmonary disease (COPD) and liver disease. The goal of the Registry is to facilitate Alpha-1 research by providing investigators with a group of Alphas and carriers willing to consider participation in research. Because the clinical, basic science and epidemiological research agenda in Alpha-1 Antitrypsin Deficiency is moving at a rapid pace, patient participation in research has never been more critical than it is today. Since Alpha-1 is a rare disease, the ability to contact a large number of Alphas increases the likelihood of research in Alpha-1 and the Registry's desirability as a study tool. Your participation aids us in the common goal to find a cure for Alpha-1 Antitrypsin Deficiency.

WHO IS ELIGIBLE?
Membership in the Alpha-1 Research Registry is currently open to individuals with Alpha1-Antitrypsin Deficiency (AAT Deficiency or Alpha-1) and to carriers of the alpha1-antitrypsin (AAT) gene. Individuals unsure of their Alpha status should consider free confidential testing through the Alpha Coded Testing Trial.

If you know you have Alpha-1 or are a carrier of the AAT gene but do not know your phenotype (the individual letters of the Alpha-1 genes), the Registry staff is happy to speak with you and facilitate phenotyping if necessary.

Institution
MUSC
Recruitment Contact
Eryn Varano
843-792-1219
alphaone@musc.edu

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