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Challenge Grant Program

National Institutes of Health

National Institutes of Health

Dr. Jim Andrews is the Co-Investigator on a grant from the National Institutes of Health as part of the “Challenge Grant” program. The grant’s Principal Investigator is Dr. Rachel Richesson from USF Health’s Pediatric and Epidemiology Center and now an affiliate faculty member of SLIS. She is also the co-editor with Dr. Andrews on the forthcoming text, Clinical Research Informatics (Springer). The grant is titled, “Library of Standardized Patient Registry Questions for Rare Diseases” and will develop standardized questions for patient registries across many different rare diseases, which can be used for developing new registries and revising existing ones. The library questions will use consistent structure and language and the underlying data elements (i.e., questions + answers + definitions) will be encoded using data standards that will facilitate reliable and consistent data collection and enhance opportunities for question re-use and data sharing. In this project, a combination of domain experts in rare diseases research and technical experts will be used to develop a coded library of standardized questions relevant to various rare diseases, with plans for implementation into the broader rare diseases research community.

Patient registries are an important first step in estimating the impact and understanding the etiology of rare diseases – requisites for the development of new diagnostics and therapeutics. The inability to access existing standardized registry questions results in lengthy and resource-intensive registry development efforts and limits opportunities for data sharing. A standardized library of data elements will speed the development and deployment of patient registries and allow registries to share and receive data from other registries or data sources. In addition, a library of standardized registry questions will enable cross-indication and cross-disease analyses, facilitate collaboration, and generate more meaningful results for rare disease patients, physicians, and researchers.

-JP

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One Response

  1. This successful securing of funds from the Congress via NIH is helpful to me, personally. It’s also something for classmates and I to discuss in BlackBoard during the Health Informatics for Medical Librarians course that Dr. Andrews is conducting. This covers so many bases: teaching, research, service, all while leading!

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