XC Regulatory Review (24IE)

This is an informational email to notify you that a XC Regulatory review has been completed. Once all XC Regulatory reviews are completed you will receive a Project In Progress notification that will allow you to access the project with all details and supporting information from the XC Regulatory reviews.

Title:	Feedback Survey for Community Counts Data Viz Tool Amendment 2
Task Type:	ICRO Review Complete - PRA Applies
Intended Use:	Amendment
Priority:	Standard; Justification:
Project Contact:	Clay_Mona (qdg4)
Initiator Comments:	An amendment is being submitted for this project to continue collection data, which is in the form of a feedback survey for the Community Counts Data Visualization Tool. We have received no responses thus far; however, Community Counts released a new module to the data visualization in 2023 and we are re-promoting the tool, with the goal of collecting feedback from users. We are extending data collection through 9/30/2025. The start date is 10/1/2024. No changes have been, or will be made, to any part of this information collection effort.
Project ID:	0900f3eb823fc537
Accession #:	NCBDDD-BDT-8/11/20-b83a9
Description:	This project is a request for generic clearance for information collection. The purpose of this project is to gather anonymous user feedback on the Community Counts (CC) Data Visualization Tool (hereafter "CC Data Viz Tool"). The CC Data Viz Tool is a web-based interactive visualization of de-identified, aggregate data from the Community Counts project. The CC Data Viz Tool is accessed via the CC website and available to the general public to learn more about the burden of bleeding disorders for individuals in the U.S. It displays information such as the number of patients enrolled in the project, demographic information, frequencies of different bleeding disorders, treatments, and more. User feedback will occur via an anonymous, voluntary, web-based survey that is estimated to take 3 minutes to complete.

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