DATA MANAGEMENT INFORMATION (PRIVACY NOTICE)
As a member of the COST CardioRNA (CA17129, https://cardiorna.eu/) collaboration as of 2022, the Institute of Pharmacology and Pharmacotherapy at Semmelweis University has launched an international database to collect metadata of cardiovascular cohort studies and facilitate communication between investigators, as described on https://cardiornacohort.semmelweis.hu/.
Since personal data are processed, and thus under Article 13 of Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons concerning the processing of personal data and the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation) (hereinafter: GDPR), the Institute of Pharmacology and Pharmacotherapy of Semmelweis University, as the data controller, provides the information contained in this Privacy Notice to the data subjects.
The scope of personal data concerned by the processing:
- Registration data: name; e-mail address; photograph (optional)
- Data relating to cohorts: list of researchers and coordinators (name, occupation, title, contact details, institute); principal investigator or contact person and their contact details. Other data related to the study were already depersonalised in the database. The uploading registered user is responsible for the lawfulness of the processing of the personal data of these persons (including the uploading to the database).
Purpose of processing personal data:
Depersonalized data are uploaded to the database by registered users, verified, and approved by the
Institute of Pharmacology and Pharmacotherapy of Semmelweis University administrator.
Purpose of data processing:
- to facilitate collaboration between investigators, rapid exchange of information;
- to facilitate the exchange of information between researchers and research projects.
Legal basis for data processing: By registering on the website, users consent to the processing of cohort data by accepting the terms of this Privacy Notice. The patients' data included in the cohorts will not be included in the cohort database in any form, and the cohort database will only store general data of the cohorts.
Duration of personal data storage: 5 years, or until withdrawal of consent to data processing. Consent may be withdrawn by sending a request per email to cardiornacohort@semmelweis-univ.hu Withdrawal of consent does not affect the lawfulness of processing based on consent prior to its withdrawal.
The personal data controller is the Institute of Pharmacology and Pharmacotherapy of Semmelweis University, which is part of the CardioRNA Cost Action collaboration. CardioRNA Cost Action defines the data processing purposes; the Institute of Pharmacology and Pharmacotherapy of Semmelweis University acts as an independent data controller (collects, records, systems, and stores data on the servers of Semmelweis University within the framework of the web service). The Institute of Pharmacology and Pharmacotherapy of Semmelweis University does not disclose or transfer the personal data received to any other person or organisation.
The data subject's rights and their enforcement related to the processing of personal data can be found in the Rules of Semmelweis University on data protection and the procedure for the fulfilment of requests for the disclosure of data of public interest publication of data subject to mandatory disclosure. Further information: https://semmelweis.hu/jogigfoig/adatvedelem-betegjog/
In the event of a complaint regarding the processing of personal data, the data subject may lodge a complaint with the supervising authority - the National Authority for Data Protection and Freedom of Information (1055 Budapest, Falk Miksa utca 9-11.).
This Data Management Information (Privacy Notice) is effective from 10/9/2022.