Biobanco-iMM

01/02/2024
17/10/2024
Data source
Human
Biobank
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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).

Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

Yes

Biospecimen access conditions

Samples collected directly by the Biobanco-IMM are available to be shared. The Scientific
Commission validates the request of the samples after the evaluation of a project submitted by the requesting researchers. The project should be previously approved by the local Ethics Committee. The meeting of the Scientific Committee for validation of the request should take place within one month after the application.

Access to subject details

Can individual patients/practitioners/practices included in the data source be contacted?

No

Description of data collection

The Biobanco-IMM is authorized by the ethics committee of the Centro Hospitalar Lisboa Norte -
Hospital de Santa Maria (approved on September 17, 2008) to collect and store samples for scientific research. The storage and management of clinical data, associated with the samples collected, is authorized by the National Data Protection Commission (authorization number 7435/2011 of 11 July 2011).When a sample is collected, a minimum core data set about the donor is gathered, which includes pseudonymized socio-demographic data such as birth date, gender, race, weight, hight, birth place, diagnostic and if the written informed consent was signed. When the sample is stored, the LIMS software keeps information about where the sample is stored.
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis
Other

Event triggering registration of a person in the data source, other

Sample Regustry into the Biobank

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

Other

Event triggering de-registration of a person in the data source, other

Asked by the donor

Event triggering creation of a record in the data source

Sample Registry into the Biobank and medical appointment
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

Linked data source 1

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

Reuma.PT

Linkage variable

Patient Number
Data management specifications that apply for the data source

Data source refresh

Monthly

Informed consent for use of data for research

Required for all studies

Possibility of data validation

Can validity of the data in the data source be verified (e.g., access to original medical charts)?

Yes

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

Common Data Model (CDM) mapping

CDM mapping

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

Yes

CDM Mappings

Data source ETL CDM version

5.4

Data source ETL status

In progress