General objective:

• Collaborative cross-border partnership aimed to create a shared database titled PoliGeNReg Patient Registry – for patients with ADPKD in the North East Region of Romania and Republic of Moldova, aimed to facilitate the collection of epidemiological data, verification of eligibility criteria for treatment, enrolment in clinical trials and connection to the European Reference Networks for Rare Diseases.
• PoliGeNReg aims to advance medical research and innovation in the field of hereditary renal cystic pathology.

Specific objectives:

• Training programs in Romania for young researchers from the Republic of Moldova in the fields of nephrology, urology, medical genetics, research, scientific communication, and courses in patient registration and tracking methods, selection modalities, and inclusion in new therapeutic programs and clinical trials. This involves traveling to Romania for direct observation in the clinical nephrology and urology departments, specialized outpatient clinics of both sections, and in the genetic laboratory.
• Interdisciplinary collaboration in the fields of nephrology, urology, and medical genetics, transfer of knowledge through best practices sharing among research groups from Romania and Republic of Moldova for ADPKD study.
• Introduction of a new genetic diagnostic tool that will offer a solution for molecular diagnosis of ADPKD and related ciliopathies. Genetic testing of selected cases/design of a gene panel entitled PoliGen Panel for ADPKD and related ciliopathies.
• Inventory of registered cases of ADPKD in both centres (Romania and Republic of Moldova) to define the epidemiological context for renal polycystic diseases by collecting existing epidemiological data for ADPKD in an appropriate format at the Dr. CI Parhon Clinical Hospital Iasi, and Timofei Mosneaga Republican Clinical Hospital in Chisinau.
• Creation of administrative, legislative, informational, and medical framework for the operation of the PoliGeNReg registry in both centres (Romania and Republic of Moldova).
• Enrolment of new ADPKD cases through active screening of ADPKD families and collaboration with patient associations, family doctors, and local hospitals.
• Implementation of the PoliGeNReg Registry and connection to European networks.
• Transfer of knowledge through best practices sharing.
• Dissemination of the results.