Research Portal

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REDCap:

REDCap is a web-based application and a platform for clinical data capture that has been embraced by the Clinical and Translational Science Award (CTSA) program of the NIH. This system provides an intuitive interface for data entry with data validation and audit trails, data manipulation capabilities and a standardized export function. Use this link to enroll new CRC Registry participants, update current participant information, and enter serious adverse events or death records. REDCap allows you to see all of your participant’s information and keep records up to date. Other studies may be added to help research with Alpha-1.

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Explore the Registry with i2b2:

i2b2 (Informatics for Integrating Biology and the Bedside) is a user friendly web-based data query tool that provides access of de-identified information from the CRC Registry’s clinical data warehouse (CDW). To access i2b2, you will be required to have a login. The login is designed to know the frequency and use of i2b2 in order to be sure we are meeting the needs of the Alpha-1 community. Your agreement to use i2b2 requires a commitment to adhere to a data use agreement.

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Current Studies

Researchers using the Alpha-1 Research Registry to recruit participants may promote their study on our current studies page. IRB approval of your advertisement will be needed. The link below will take you to the studies that are currently recruiting through the Registry. If you would like to add your study to the website, please email the Registry staff at alphaone@musc.edu.

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Results from Past Studies

The Alpha-1 Research Registry has helped with recruitment for Alpha-1 research for almost 20 years. Here you can see results from our Community Based Partnership Research group, as well as find links to publications that have resulted from Registry studies, and studies who used the Registry for recruitment. If you have used the Registry and since published your study results, please let the Registry staff know so we can make sure your study results are recognized. 

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ACT for Researchers

Potential researchers who would like to use our confidential data from the ACT Study to conduct their research projects can find more information below. Since the ACT Study’s inception in 2001, there have been a total of six questionnaires that have asked different questions of interest to researchers in the Alpha-1 community. This page contains more information about the six questionnaires and who to contact for questions. 

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Newsletters

The Alpha-1 Research Registry releases a bi-annual newsletter for participants that highlights new CRCs, study results, interesting Alpha stories and much more. This is a great resource for researchers looking to recruit for new studies, or to showcase your study results. If you would like to read previous newsletters, please select the link below. If you would like to be featured in the newsletter or submit an article for a future edition, please email the Registry staff at alphaone@musc.edu. 

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