MDR Data Sources

To do...

BioLINCC

The National Heart, Lung and Blood Institute (NHLBI) Biologic Specimen and Data Repository is the coming together of two entities: the NHLBI Biologic Specimen Repository (NHLBI Biorepository), managed by the NHLBI, Division of Blood Diseases and Resources (DBDR), Transfusion Medicine and Cellular Therapeutics Branch, and the NHLBI Data Repository, managed by the NHLBI, Division of Cardiovascular Sciences (DCVS), Epidemiology Branch. These two programs have always had a similar mission, namely to enhance and facilitate further research in cardiovascular, pulmonary and hematologic conditions by providing access to qualified investigators to stored biospecimen and data collections.

Terms & conditions

Terms & conditions are summarised under Trademark, Branding, and Logo (see: https://www.nhlbi.nih.gov/about/contact/trademark-branding-and-logo). This states that:

"Most of the information on the NHLBI website is in the public domain and can be used without restriction. The NHLBI asks only that no changes be made to the publications, videos, images, or other formatted multimedia products and that the material, as well any NHLBI webpage links, not be used in any direct or indirect product endorsement or advertising. Although organizations may add their own logos to published NHLBI materials, organizations may not use the NHLBI logo on other print or digital materials without the Institute’s permission. (...)
Please use the following language to cite the source of the materials: Source: National Heart, Lung, and Blood Institute; National Institutes of Health; U.S. Department of Health and Human Services."

In compliance with this, the ECRIN MDR makes no changes to the data nor is involved in any 'direct or indirect product endorsement or advertising'. We do not include the NHLBI logo. Please note it is also the intention is to provide a 'pop-up' over displayed data with provenance information, including source and date of data capture. This is planned for version 1.0 of the MDR.

The same web page also states that:
"Unless noted otherwise, information posted on the NHLBI website within the nhlbi.nih.gov domain is considered to be in the public domain. You may link to the NHLBI website from your website without permission. Other organizations are free to establish links to NHLBI online resources. When establishing links to the Institute’s website, you may not position or create the possible impression that the NHLBI is endorsing or promoting any particular organization, material, product, service, content, or information."

In compliance with this, the ECRIN MDR provides only simple links back to the relevant NHLBI page and adds no further comment or information, other than the provenance data to be added, as described above.