AoU Research Priorities Use Cases

Can Electronic Health Records (EHRs) be effectively utilized to facilitate clinical trials in pediatrics?

Use of EHRs in interventional trials is challenging due to lack of standardization and harmonization. There is a need to incorporate common data elements (developmental data, symptoms), establish linkages (event flags; real-time links for diagnosis, treatment and adherence), enhance interoperability across vendor systems, standardize adverse event capture, develop identification for phenotypes or rare diseases, and streamline data collection.

The remaining questions allow you to outline in more detail the information needed to address your research question. The series of questions allow up to five entries. If you have more than five entries, please try to prioritize them and enter the remainder in the final field. When done, click Submit at the bottom. No

Select your required Data Item #1, which is most important to your study. This would be an item that needs to be generated and collected from different sources using various procedures, tools, techniques, assays, etc. If not in the current selection, please enter it in the textbox below. History, health

By what method will Data Item #1 be obtained? This may Include procedures, tools, techniques, assays, and analytical approaches for the collection, measurement, or analysis of data. If you do not find the required method, you may enter it in the textbox below. Electronic Health Records (EHR)

If you did not find your methodology specifications for Data Item #1 above, please enter it here. All available

Data Item #2 History, medication

Method #2 Electronic Health Records (EHR)

If Specification #2 was not in the dropdown, please enter it here: All available

If Data Item #3 was not in the dropdown, please enter it here History, diagnosis

Method #3 Electronic Health Records (EHR)

If Specification #3 was not in the dropdown, please enter it here All available

If Data Item #4 was not in the dropdown, please enter it here Expert user groups

If Method #4 was not in the dropdown, please enter it here Consensus conference

If Specification #4 was not in the dropdown, please enter it here None

If Data Item #5 was not in the dropdown, please enter it here Maternal-child EHR linking

Method #5 Electronic Health Records (EHR)

If Specification #5 was not in the dropdown, please enter it here Establish intrafamily EHR connectivity

If you have more than five data items, you may enter them here.

-Health informaticians and user groups provide standards for use in the protocol.
-Intra- and Inter-family EHR linking.
-EHR common data elements for record uniformity
-Pediatric EHR common data standards
-Participant reasons for not consenting to clinical trials and withholding access to EHR
-Collaboration between clinicians, researchers, regulatory agencies, patients, policy makers, Information Technology (IT) experts and electronic health records vendors to develop a system, maybe even a type of overlay that can be imposed upon with current EHR structure to extract necessary data for clinical research.

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Idea No. 78