Idea started here... Regional Human Genetics Center CRGM Dolj Craiova, Romania

Transcription

1 PROGENERARE,,Îmbunătățirea competențelor PROfesionale ale personalului medical implicat în realizarea actului medical din specialități relevante pentru managementul multidisciplinar al bolilor GENEtice RARE - cod SMIS

2 PROGENERARE Multidisciplinary management of GENETIC RARE Diseases: from theory to national guidelines PROGENERARE (Grant: POCU /91/4/8). mysmis code

3 Idea started here... Regional Human Genetics Center CRGM Dolj Craiova, Romania

4 National level impact!

5 PARTNERS LIDER: Emergency Clinical County Hospital Craiova Project Manager: Mihai IOANA, MD, PhD PARTNER 2: University of Medicine and Pharmacy of Craiova Coordinator P2: Florin BURADA, MD, PhD PARTNER 3: Prader Willi Association, Romania Coordinator P3: Psychologist Dorica DAN

6 PROGENERARE keywords Education, networking, Romanian guidelines

7 GENERAL INFORMATION Management Authority: Call: Budget: Sponsor: Start: The programme is managed by the Romanian Ministry of European Funds Romanian Operational Programme (OP) "Human Capital. POCU/91/4/8/ 9,856,094 RON (2,097,041 EUR) European Union funded educational grant. European Social Fund (ESF) (signed). Start August 2018

8 GENERAL OBJECTIVE to improve the currently existing standard of care for rare/genetic disease patients. Create a network of professionals able to help their patients in a integratedmultidisciplinary environment!

9 SPECIFIC OBJECTIVES SO1 Develop of a new specific training program in one of the priority health care domains (as the rare diseases area has only begun to benefit from national recognition recently, there are currently no continuing medical education programs in this field) by developing a course (curriculum) on rare diseases and medical genetics and its crediting with EMC points for physicians and nurses; COURSES, WORKSHOPS SO2 Establish a framework and integrated approaches to the medical act for patients with rare diseases, by developing GUIDELINES for medical practice in the rare diseases field.;

10 SPECIFIC OBJECTIVES SO3 Increase the access of specialists involved in the provision of medical services and also in the implementation of priority health programs, employees of public institutions providing public health care or public health services, as well as in family medicine practices under contractual relations with the Health Insurance House, training programs, participation in experience exchange or good practice exchange in the priority health field on rare diseases and medical genetics

11 SPECIFIC OBJECTIVES SO4 Improve the skill level and increase the technical capacity of the specialists involved in the delivery of medical services and at the same time implementing health priority programs by: providing a specific training course in the field of rare diseases and medical genetics, credited with EMC points, for 1000 physicians and nurses (primary / specialists / trainees and nurses) of specialties relevant to the multidisciplinary management of rare diseases; organizing 8 workshops of 2 days - one in each development region, supported by 6 transnational experts from the Netherlands and the UK;

12 SPECIFIC OBJECTIVES SO5 Aware and empower the non-trained specialists and other stakeholders on the issue of integrated diagnosis and management in the field of rare diseases by developing a specific awareness and early detection campaign for rare diseases in all development regions of the country;

13 SPECIFIC OBJECTIVES SO6 Improve the methodological framework and technical competencies of the medical specialists, increase the involvement of the Romanian specialists in the European information exchange initiatives by developing programs for the exchange of experience and good practices: 1 transnational program in France, UK and the Netherlands of which will benefit, for a week, 100 members of the target group -physicians- from all development regions, selected from those who have finished and completed the EMC course; one in a national context held in Zalau in a day care centre for patients with rare diseases, of which who will benefit, for a week, 80 participants selected from those who have completed the EMC course - 10 participants / region.

14 Eligible applicants (target group) 1000 professionals Physicians (specialists&medical residents) and nurses Relevant medical specialities rare/genetic conditions Medical Genetics, Obstetrics-Gynecology, Neonatology, Pediatrics, Pediatric Surgery, Pediatric Neurology, Endocrinology, Pediatric Psychiatry, Cardiology, Ophthalmology, Otorhinolaryngology, Oncology, Laboratory Medicine, Internal Medicine, Radiology, Radiology and Imaging, Family Medicine, Anaesthesia & Intensive Care Medicine, Physical medicine and rehabilitation

15 Target group individuals: 860 physicians; 140 nurses; 900 physicians and nurses will be recruited from 7 less developed regions; 100 physicians and nurses will be recruited from the Bucharest-Ilfov region

16 CALENDAR DE FORMARE Zalău 60 pers. GT (3 grupe) aprilie 2020 Iași 80 pers. GT (4 grupe) septembrie 2019 Oradea 60 pers. GT (3 grupe) martie 2020 Oradea Zalău Cluj-Napoca Iași Sibiu 60 pers. GT (3 grupe) iunie 2019 Cluj-Napoca 80 pers. GT (4 grupe) ianuarie - februarie 2020 Timișoara Târgu Mureș Sibiu Brașov Brașov 60 pers. GT (3 grupe) octombrie 2019 Târgu Mureș 60 pers GT (3 grupe) noiembrie 2019 Pitești Constanța 80 pers. GT (4 grupe) mai 2019 Timișoara 80 pers. GT (4 grupe) mai 2020 Craiova București Constanța Craiova 200 pers. GT (10 grupe) ianuarie februarie 2019 Pitești 80 pers. GT (4 grupe) martie 2019 București 100 pers. GT (5 grupe) aprilie 2019

17 5 COURSES/MODULES I Medical Genetics II - Screening and prenatal diagnostics in rare diseases III - Dysmorphology IV - Multidisciplinary team approach in rare/genetic diseases V Molecular Genetics and Laboratory Medicine

18 Soon:

19 Thank you! PROGENERARE team