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Creutzfeldt-Jakob Disease Lookback Dataset (CJDLD)

Metadata Updated: May 1, 2021

The tracking system is for patients identified in the Creutzfeldt Jakob Disease (CJD) lookback notification initiative established in January 1995 as part of the lookback notification of all Department of Veterans Affairs (VA) patients who may have received certain lot numbers of blood derivatives or blood components produced from donors with CJD. Even though the Centers of Disease Control and Prevention characterized the risk of transmission of CJD from blood derivative products as 'small and immeasurable' and 'theoretical', VA believed it had an ethical obligation to inform patients of the exposure to potentially contaminated blood components or plasma derivative products while under VA's care. The patients were notified. The Veterans Health Administration (VHA) established a tracking system for individuals who received these products to determine if there was an increase in VA CJD cases. Every two years, the VHA National Infectious Diseases Service updates the status of patients who had previously been identified through the VA CJD lookback notification initiative. The Creutzfeldt-Jakob Disease Lookback Dataset (CJDLD) is a prospective collection of data; requests for individual reports are not accepted.

Access & Use Information

Non-public: This dataset is not for public access or use. Specific details are provided below. License: Creative Commons CCZero

Downloads & Resources

Dates

Metadata Created Date November 10, 2020
Metadata Updated Date May 1, 2021

Metadata Source

Harvested from VA JSON

Additional Metadata

Resource Type Dataset
Metadata Created Date November 10, 2020
Metadata Updated Date May 1, 2021
Publisher Department of Veterans Affairs
Maintainer
Identifier VA-VHA-PCS-002
Data First Published 2017-07-26
Language en-US
Data Last Modified 2020-12-01
Rights Health Insurance Portability and Accountability Act, protected health information.
Category Basic Statistics, Use, and Operational Data
Public Access Level non-public
Bureau Code 029:15
Metadata Context https://project-open-data.cio.gov/v1.1/schema/catalog.jsonld
Metadata Catalog ID https://www.data.va.gov/data.json
Schema Version https://project-open-data.cio.gov/v1.1/schema
Catalog Describedby https://project-open-data.cio.gov/v1.1/schema/catalog.json
Data Quality True
Harvest Object Id 0b940e49-e1de-4248-a6d9-eb0b2b8e0084
Harvest Source Id fcd1f625-1c2e-4663-95cf-1b0eb053cce1
Harvest Source Title VA JSON
Homepage URL https://www.data.va.gov/d/2jyn-znvf
License https://creativecommons.org/publicdomain/zero/1.0/
Program Code 029:041
Source Datajson Identifier True
Source Hash 465b2a7d395132a0d7b6d1244c5d28460489f59a
Source Schema Version 1.1
Temporal 1995-01-01T05:00:00Z/2014-12-31T05:00:00Z

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