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

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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

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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
Samantha Renaud
803-576-5913
renaud2@mailbox.sc.edu

Translating the Asthma Medication Ratio into a Point of Care Risk Assessment and Communication Tool Save

Date Added
June 23rd, 2016
PRO Number
Pro00054731
Researcher
Anne Lintzenich

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Keywords
Asthma, Children's Health
Summary

This study will consist of hour long focus groups or interviews with parents or legal guardians of children with asthma. The goal of this research is to determine barriers and challenges that parents face regarding daily asthma medication adherence. We also seek to identify success stories of parents who have been able to achieve high levels of medication adherence in their children and what factors might have facilitated this success. We will use the results of this study for the future development of an intervention that uses individual patient medication history to assess and communicate risk to providers and families in order to improve asthma medication adherence and reduce preventable Emergency Department visits and Hospitalizations.

Institution
MUSC
Recruitment Contact
Erin Dawley
843-792-2542
hintone@musc.edu

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

Date Added
November 18th, 2014
PRO Number
Pro00026071
Researcher
Charlie Strange

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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

Silhouette
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

Silhouette
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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