SUDEP CDEs Public Review Form

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These case report forms (CRFs) containing common data elements (CDEs) for preclinical SUDEP research are intended to help increase the rigor, transparency, standardization, and translation of preclinical SUDEP research. These CDEs serve not only as a guide to suggested elements for researchers to collect and report for SUDEP studies of various types, but the case report forms can also serve as an experimental lab notebook, providing a tool for researchers. The ultimate goal is to provide a set of data elements, stratified according to those most important to collect to optional elements, to aid in the collection and reporting of preclinical SUDEP research.

Please provide your feedback on the common data elements (CDEs) utilizing the questions below. If you would like to provide more detailed feedback on individual case report forms (CRFs)/CDEs, please download the form(s), make your comments in track changes, and email the form(s) to Amy.Maxwell@CureEpilepsy.org:

Are the CDEs easy to use? *

Yes

Required

If no, are there ways to increase ease of use?

Are there any CDEs that are currently not included but should be? *

Yes

Required

If yes, please specify

Are there any CDEs that are that are currently included but should not be? *

Yes

Required

If yes, please specify

Are there any changes to the structure of the case report forms that you would suggest?
*

Yes

Required

If yes, please specify

Are there certain CDEs you view as essential to collect (high importance CDEs)? If so, please specify.
*

How do you envision using CDEs in your laboratories / research?
*

Use as lab notebook

Use as key words/headings for research database

Animal log of characteristics and circumstances of events/death

Other:

If other, please specify

Would you use these forms if they were available in electronic format in REDCAP?
*

Yes

Required

Is there another platform or format in which you would prefer to utilize the CDEs (i.e., excel forms, pdf forms, word documents)?
*

What concerns do you have over the use of CDEs in your research?
*

Duplication of current method used

Demand on time

Not aligned with preferred practices

Other:

If other, please specify

What would make you more likely to use CDEs in your research?
*

Required to use

Doesn't demand time

Doesn't duplicate method currently used

Use of drop down / click option

Auto-fill based on previous record

Other:

If other, please specify

Are there any other questions or comments you wish to share?
*

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