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Amyloid Imaging to Prevent Alzheimer’s Disease (AMYPAD) Prognostic and Natural History Study (PNHS)

First published 08/04/2024

Last updated 17/10/2024

Data source

Human

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Administrative details Data elements collected Quantitative descriptors Data flows and management

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Access and validation
Event triggering registration
Data source linkage
Data management specifications that apply for the data source
Common Data Model (CDM) mapping

Access and validation

Governance details

Documents or webpages that describe the overall governance of the data source and processes and procedures for data capture and management, data quality check and validation results (governing data access or utilisation for research purposes).

AMYPAD PNHS - Data Access Request

Biospecimen access Are biospecimens available in the data source (e.g., tissue samples)?: No

Access to subject details Can individual patients/practitioners/practices included in the data source be contacted?: No

Event triggering registration

Event triggering registration of a person in the data source: Other

Event triggering registration of a person in the data source, other: Admitted to research cohort

Event triggering de-registration of a person in the data source: Other

Event triggering de-registration of a person in the data source, other: Withdraw of consent to be included in Parent Cohort

Event triggering creation of a record in the data source: Inclusion in Parent Cohort

Data source linkage

Linkage Is the data source described created by the linkage of other data sources (prelinked data source) and/or can the data source be linked to other data source on an ad-hoc basis?: Yes

Linkage description, pre-linked: The current version of the dataset integrates information from 10 Parent Cohorts: ALFA+, AMYPAD DPMS, DELCODE, EMIF-AD (60++ and 90+), EPAD LCS, FACEHBI, F-PACK, Microbiota, and UCL-2010-412
Each participant enrolled in the AMYPAD PNHS study received a unique identifier that was matched by the parent cohort to their original unique identifier.
Linkage Strategy - Deterministic
Linkage is based on unique subject identifier (person_id) and visit identifier (visit_id)

Linked data source 1

Pre linked Is the data source described created by the linkage of other data sources?: No

Data source, other: ALFA+

Linkage strategy: Deterministic

Linked data source 2

Pre linked Is the data source described created by the linkage of other data sources?: No

Data source, other: AMYPAD DPMS

Linkage strategy: Deterministic

Linked data source 3

Pre linked Is the data source described created by the linkage of other data sources?: No

Data source, other: DELCODE

Linkage strategy: Deterministic

Linked data source 4

Pre linked Is the data source described created by the linkage of other data sources?: No

Data source, other: EMIF-AD 60++

Linkage strategy: Deterministic

Linked data source 5

Pre linked Is the data source described created by the linkage of other data sources?: No

Data source, other: EMIF-AD 90+

Linkage strategy: Deterministic

Linked data source 6

Pre linked Is the data source described created by the linkage of other data sources?: No

Data source, other: EPAD LCS

Linkage strategy: Deterministic

Linked data source 7

Pre linked Is the data source described created by the linkage of other data sources?: No

Data source, other: FACEHBI

Linkage strategy: Deterministic

Linked data source 8

Pre linked Is the data source described created by the linkage of other data sources?: No

Data source, other: F-PACK

Linkage strategy: Deterministic

Linked data source 9

Pre linked Is the data source described created by the linkage of other data sources?: No

Data source, other: Microbiota

Linkage strategy: Deterministic

Linked data source 10

Pre linked Is the data source described created by the linkage of other data sources?: No

Data source, other: UCL-2010-412

Linkage strategy: Deterministic

Data management specifications that apply for the data source

Data source refresh: Every 6 months

Informed consent for use of data for research: Other

Informed consent, other: Not applicable when project aims aligns with original project description

Possibility of data validation Can validity of the data in the data source be verified (e.g., access to original medical charts)?: No

Data source preservation Are records preserved in the data source indefinitely?: Yes

Approval for publication Is an approval needed for publishing the results of a study using the data source?: Yes

Data source last refresh: 01/06/2023

Common Data Model (CDM) mapping

CDM mapping Has the data source been converted (ETL-ed) to a common data model?: Yes

CDM Mappings

CDM name: OMOP

CDM website: https://www.ohdsi.org/Data-standardization/

Data source ETL CDM version: 5.4

Data source ETL frequency: 6,00 months

Data source ETL status: Completed

Data source ETL specifications (link): https://github.com/AMYPAD/ETL-PNHS

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