What is the Registry?
The Andalusian Registry of Sample Donors for Biomedical Research is a tool that allows Andalusians to participate directly in the development of biomedical research. It is a database or registry in which the basic identification and health information (data) of people who are interested in participating voluntarily in research is collected.
The organisation that is responsible for the Registry is the General Secretariat for Research, Development, and Innovation in Healthcare at the Andalusian Ministry of Health and Families. The Biobank of the Public Health System of Andalusia is in charge of the Registry’s management.
Why is the donation of biological samples important?
Donations of biological samples are essential to the viability of biomedical research projects that help advance scientific knowledge, disease diagnosis, therapeutic efficacy, and access to drugs. At present, the donation of biological samples remains scarce. One way of reducing the shortage of samples for research purposes was to create the Donor Registry. The immediate purpose of this registry is to satisfy the needs of the largest number of biomedical research projects as possible.
Currently, in Andalusia, about one third of all proposed biomedical research projects cannot be carried out because there are no samples available with the characteristics requested by researchers. Consequently, we see that the Registry of Donors for Research is an invaluable initiative aimed at alleviating this problem. This is achieved via the altruistic participation of our citizens. Given these circumstances, we have created a database in which anyone who is interested in participating in biomedical research can register their interest and personal details, thus allowing specific donations to be activated in response to specific research projects. The Donor Registry has thus become a very efficient way of making samples available for biomedical research.
How does the Registry work?
The Biobank detects the need for a certain type of sample and so accesses the Registry and compares the information of the registered donors (clinical and epidemiological data) with the inclusion criteria of the research project for which the samples are requested. Once potential donors have been identified, the Registry will contact them and explain to each potential donor what the research project is about. The Registry will invite these donors to participate in the research project. If they agree to participate, then they will be asked to provide their informed consent for the transfer of their samples and associated data to the Biobank of the Public Health System of Andalusia. The strategy for the collection of the sample is also communicated to the donor.
Should a registered donor indicate that they do not wish to participate in a specific research study, this does not disqualify the donor from continuing to be part of the Donor Registry and being available for future research.
The Registry of Donors of Samples for Biomedical Research is an initiative by the Ministry of Health that is aimed at promoting biomedical research by facilitating the participation of citizens in such research. The Registry finds its legal foundations in the “Order of June 15, 2015, that, within the scope of the Ministry of Equality, Health and Social Policies, establishes a personal database called "Donors of Samples for Biomedical Research in Andalusia"., "Donors of Samples for Biomedical Research in Andalusia". This Order was published in the Official Gazette of the Junta de Andalucía, on June 23, 2015.
GDPR Terms and Conditions
The personal identification data, contact data, and associated clinical- or health data that the Registry contains will be used in accordance with the provisions of Regulation (EU) 2016/679 General Data Protection, current national regulations regarding data protection, and Law Ley 14/2007 of July 3, that concerns Biomedical Research.
By transferring your data to the Registry, you give your consent for your data to be processed so that service requests made of the Registry can be processed and responded to. Your data will not be transferred to third parties, unless such a transfer of data is mandated by a legal obligation. You can exercise the right of access, rectification, deletion, and the portability of your data. Furthermore, you may set limits on or oppose treatment. The General Secretariat of Research, Development and Innovation in Healthcare at the Ministry of Health and Families is responsible for this treatment.