REDMO Privacy Policy

The Bone Marrow Donor Registry (REDMO) was created by the Josep Carreras Foundation in 1991, with the aim of ensuring that all patients with leukaemia (or other blood diseases) who needed an allogeneic transplant for their cure and lacked a compatible family donor could access a compatible one through a bone marrow donation from a voluntary unrelated donor.

This document details what personal data REDMO gathers, how it is gathered and stored and the purposes for which it is used. There is also information on how to contact the registry and the rights of the data subjects. This document has been created in response to new European legislation: the General Data Protection Regulation (Regulation (EU) 2016/679, hereinafter “GDPR”).

DATA CONTROLLER:

Josep Carreras International Private Foundation, G-58734070, with headquarters at calle Muntaner 383 de Barcelona (CP 08021).

DATA PROTECTION OFFICER: dpd@fcarreras.es

 

Why are donor data gathered?

REDMO gathers donor data in order to determine the compatibility of donors with patients who are candidates for a bone marrow transplant and for the maintenance, development and control of our professional relationship while waiting for a patient who needs your donation.

 

How are personal data obtained?

REDMO works in collaboration with the different Autonomous Communities and local donor centres to gather data on haematopoietic progenitor donor candidates.

The data are gathered with the consent of the data subject, who must complete the necessary informed consent forms.

 

What personal data is sent to REDMO?

The data gathered to identify an individual is limited to first and last name, contact details, ID card number, date of birth and gender. This data is necessary to ensure that medical data gathered at different points in time are accurately stored in the same record.

Each donor receives a unique, non-informative number in the REDMO database, which is used to determine the compatibility of donors with patients who are candidates for bone marrow transplantation. A minimal amount of personal donor data is required for donor registration, which contributes to the accuracy of the data and therefore helps to improve the effectiveness of donor matching and patient outcomes. This process of separate storage is known as pseudonymisation and is defined in the GDPR.

 

How are personal data processed?

The legal basis for data processing is the free consent of the individual, which can be revoked at any time. The data will be retained for the duration of this consent.

The Josep Carreras Foundation guarantees that all personal data under its responsibility is processed in accordance with the GDPR:

• Processed in a lawful, fair and transparent manner in relation to the data subject.
• Gathered for specified, explicit and legitimate purposes.
• Processed in a way that is adequate, relevant and limited to what is necessary in relation to the purposes for which they are requested.
• Accurate and up-to-date.
• Kept in a form that allows the identification of the data subjects, solely for the purpose of maintaining the link with our institution.
• Processed in such a way as to ensure adequate security of personal data through the implementation of appropriate technical or organisational measures.

 

How are personal data stored?

The data are stored in an electronic database located at the headquarters of the Josep Carreras Foundation. The database is protected by security measures and a strict access control policy, profiles and privileges of authorised users, recovery copies, alarms for detection of repeated access attempts or other types of content alteration, among others.

Your personal data will be stored indefinitely in REDMO in order to guarantee the purpose of the processing, and thus determine the compatibility of donors with patients who are candidates for a bone marrow transplant, or until you indicate to us that you no longer wish to be a donor candidate. In the event that you have made a donation, your data will be stored indefinitely in order to guarantee the traceability and follow-up of the bone marrow transplant in the patient.

 

Who has access to my personal data?

The data will only be made accessible/targeted to the persons and/or departments of the Organisation that require it in order to carry out the functions of their job.

Transfers of personal data

REDMO works with international Donor Registries, the donor’s pseudonymised personal data may be sent to Registries located in countries outside the European Economic Area that have the same level of privacy protection required by the GDPR for the purpose of determining the donor’s compatibility with patients who are candidates for a bone marrow transplant.

REDMO shall not sell, distribute or transfer personal data to third parties, unless the data subject has given his or her consent to REDMO or as permitted by law.

 

What are my rights as a data subject?

The data subject is entitled to the following information in relation to the processing of his or her personal data:

• Confirmation of whether data relating to said individual are being processed.
• Information on the purposes of the processing operations, the categories of data concerned and the recipients or categories of recipients to whom the data are disclosed.
• Disclosure of the data being processed.

The data subject has the following rights:

• Access to information relating to their personal data processed.
• Rectification of inaccurate or incomplete personal data.
• Withdrawal of consent in such a way that the personal data are no longer available for processing.
• Request that their personal data be completely erased from the Josep Carreras Foundation’s database.
• Any other rights granted to the data subject with respect to his or her personal data, according to their respective local legislation.

If, as a data subject, you wish to exercise any of the rights listed above, please send an e-mail to dpd@fcarreras.es or use the following postal address: c/ Muntaner, 383, 2º. 08021, Barcelona.

The data subject may lodge a complaint with the supervisory authority, the Spanish Data Protection Agency.

 

Comments or questions

If you have any comments or questions about this privacy statement, please send them to dpd@fcarreras.es

If you have any comments or questions about REDMO or bone marrow donation, please send them to donantes@fcarreras.es

You can also consult the privacy policy of your autonomous community by accessing the Transplant Coordination website of your community.

[i] Pseudonymisation – the processing of personal data in such a way that they can no longer be attributed to a data subject without the use of additional information, provided that such additional information is kept separately and is subject to technical and organisational measures designed to ensure that the personal data are not attributed to an identified or identifiable private individual.

Regulation (EU) 2016/679 of the European Parliament and of the Council. Article 4. 27 April 2016.

Once there, you will normally have a blood sample taken as for a normal blood test and you will have to fill in the informed consent form. After a few weeks you will receive an SMS to your mobile and/or an e-mail confirming your registration. You will then be available for all donor searches initiated from any registry in the world. Remember that if you change your address, telephone number or e-mail address, you must inform us by sending an e-mail to donantes@fcarreras.es.