Patient Information

Α National Registry of Neurodegenerative Diseases and their Precursor Forms shall be created within the framework of the Flagship Action for the Research of Neurodegenerative Diseases on the Basis of Precision Medicine.

The Registry will include all the necessary information for the systematic monitoring of these diseases in Greece aiming to the significant improvement of diagnostic and therapeutic means for the benefit of public health. The entries in the Registry will be the subject of in-depth research that potentially enrich the clinical picture for each patient in the future and lead to the development of precision medicine applications.

Data from the individual medical records of patients treated in the clinics and nursing units that participate in the National Medical Precision Network will be transferred to the Registry under the responsibility of the attending physicians. Patients’ individual medical records are classified by disease.

These data are demographic, medical (test results, family history, treatment, etc.), as well as lifestyle information. The Registry shall also contain data that have already been collected from patients before the commencement of the present Research, as well as data collected from healthy adults («control group»). 

The processing of participants’ personal data is carried out based on Article 9 para. 2 (h), (i), (j) of the EU General Data Protection Regulation, which provides for the exceptional processing of sensitive data for the purposes of preventive medicine, public health and scientific research, subject to confidentiality guarantees.

The data will be available for processing exclusively to the Network’s researchers, after a coding process which ensures that the identities of the individuals that participate in the Research are not being revealed (pseudonymization of personal data). Access to participants’ identities can be granted (apart from their attending physicians), only to the Coordinators of the Network and to researchers that are specially authorized by them, all bound by a duty of confidentiality.

In addition to the authorized researchers of the Network and the attending physicians of the individuals that participate in the Research (for the latter, as far as findings concerning their patient are concerned), the data kept in the Registry (either under the participants’ names or pseudonymised) are excluded from anyone’s access. The researchers’ announcements of findings resulting from the processing of the data do not include disclosure of the identities of the data subjects.

The data are kept in the Registry for as long as the Network is also kept in operation.

Individuals whose data are kept in the Registry have the special rights for data protection, in accordance with the applicable legislation (General Regulation of the EU data Protection / GDPR and Law 4624/2019), i.e. the rights of access and rectification or restriction of processing, as well as the right to data portability, where applicable.

Results of the data processing in the context of the project will be communicated to patients (through their attending physician) only if they have a diagnostic or therapeutic value and are considered useful for the improvement of the followed treatment.