| Priority | Task | Deadline | Outputs/indicators | Gesturer |
Cooperating entities |
Financing/presumption |
Financial requirements (eur) |
|
|---|---|---|---|---|---|---|---|---|
| 2016 | year 2017 | |||||||
|
1. Develop information public on the subject ZCH |
1.1. Information of experts and also the lay public about the ZCH |
2016 – 2020 |
Media, Campaigns, Collections and auctions, Discussion forums, Seminars, Lectures, Leaflets |
MZ SR, SAZCH, ÚDZS |
EURORDIS, CEG RD, PO, OS, ZP |
Multi-source financing, public sponsors private partnership |
||
|
1.2. Internet portal SAZCH |
2016 – 2020 | Internet portals | SAZCH |
EURORDIS, Commission MZ SR, CEG RD |
SAZCH | |||
|
1.3. Internet portal NCZI |
2016 – 2020 |
Internet portals, zCH information, register |
NCZI |
CEG RD, Commission MZ SR |
NCZI | |||
|
1.4. Orphanet Slovakia development of the national version, mass media presentation, support the use of the site |
2016 – 2020 |
Website ORPHANET |
DFNsP BA |
By project ORPHANET |
||||
|
1.5. Information sources for public neonatal selective screening in Slovakia |
2016 – 2020 | Information sources |
MZ SR, SCN SR |
SAZCH | MZ SR | |||
|
1.6. Help line ZCH by eU Enforcement Directives patients cross-border health care, development cross-border care |
2016 – 2020 | Help line ZCH |
SPA, MZ SR |
OS, SAZCH | ÚDZS | |||
|
2. Expand education professional public on SCP |
2.1. Programme Conference Rare diseases in the Slovak Republic education' |
2017 |
Programme conference, current evaluation slovak Republic zCH issues |
MZ SR |
SLS, SLG, SLK, NCZI, LF |
MZ SR | 10 000,00 | |
|
2.2. Support for implementation training in the field of OSH within the specialization study in relevant specialization studies programmes |
2016 – 2020 | Analysis | MZ SR |
Educational establishments carried out by accredited specialisation study programmes |
||||
|
3. Expand and improve diagnostics, treatment and care patients with ZCH |
3.1. Support and development health care national developments specialist expertise workplace for ZCH in Slovakia |
2016 – 2017 |
2 full-bodied national specialised expertise zCH workplaces in Slovakia, which will be involved in european reference nets specialised zCH workplaces |
MZ SR |
Commission of MZ SR, OS, ZP, SLK, LF, SAZCH, TERRITORY |
Public call MZ SR for the purpose of granting subsidies within the meaning of article 2 (2) of the 1 letter (d) the law č. 525/2010 Z. z. on the granting of subsidies under the authority of the Ministry health in Slovakia republics to support implementation of individual activities within approved national programmes |
100 000,00 | 100 000,00 |
|
3.2. Availability of quality treatment for patients with ZCH |
2016 – 2020 |
Continuous upgrade list available medicinal products for ZCH and development professional guidelines for treatment of patients with ZCH |
MZ SR |
SUKL, SÚDZS, ZP, FAFUK, Associations manufacturers/suppliers Orphan drugs health devices |
||||
|
4. Screening and prevention of ZCH |
4.1. Prenatal screening a prenatal diagnosis ZCH |
2016 – 2020 |
Proposals for methodology, or upgrade professional guidelines |
MZ SR |
SLS, SSLG, SGPS, ZP |
|||
|
4.2. Enlargement and improvement selective screening in Slovakia (e.g.: about DMP) |
2016 – 2020 |
Buying and introducing technologies (2x analyser) for tandem weight spectrometry liquid by chromatography, GC MS), and next investigations equipment |
MZ SR | SCN SR, OS, ZP |
Public call MZ SR for the purpose of granting subsidies within the meaning of article 2 (2) of the 1 letter (d) the law č. 525/2010 Z. z. on the granting of subsidies under the authority of the Ministry health in Slovakia republics to support implementation of individual activities within approved national programmes |
|||
|
4.3. Link SCN SR with the laboratory DMP in FNsP FDR BB |
2016 – 2020 |
Buying and introducing technologies (automatic) analyser amino acids, GC MS) |
MZ SR | SCN SR, OS, ZP |
Public call MZ SR for the purpose of granting subsidies within the meaning of article 2 (2) of the 1 letter (d) the law č. 525/2010 Z. z. on the granting of subsidies under the authority of the Ministry health in Slovakia republics to support implementation of individual activities within approved national programmes |
|||
|
4.4. Health organisation care, follow-up neonatal screening |
2016 – 2020 |
Workshop to processing binding rules complex care patients, selected newborn by screening development professional guidelines for all species zCH screenings |
MZ SR | SCN SR, OS, ZP | ||||
|
4.5. Archive of dry samples drops of blood in SCN SR |
2016 – 2020 |
Sample archive dry drop of blood in SCN SR |
MZ SR, SCN SR |
MZ SR | ||||
|
5. Supporting science research in the ZCH area |
5.1. Resort research in zCH area implementation of new ones technologies (e.g.: arrayCGH technology and NGAs) in clinical practice zCH diagnostics |
2016 – 2020 |
Support administered research within grant scheme for departmental level, i.e. support research projects, targeted at zCH issues |
MZ SR |
Commission of MZ SR, The Scientific Council of the Slovak Republic, SLS, OS |
Public call MZ SR for the purpose of granting subsidies within the meaning of article 2 (2) of the 1 letter (a) the law č. 525/2010 Z. z. on the granting of subsidies under the authority of the Ministry health in Slovakia republics to support research and development in mean health |
||
|
5.2. Resort research in oncology ZCH areas diseases implementation of new ones technologies (e.g.: arrayCGH technology and NGAs) in clinical practice zCH diagnostics |
2016 – 2020 |
Support administered research within grant scheme for departmental level, i.e. support research projects, targeted at zCH issues in relation to cancer diseases |
MZ SR |
Commission of MZ SR, The Scientific Council of the Slovak Republic, SLS, OS, Onco-genetic workplaces |
Public call MZ SR for the purpose of granting subsidies within the meaning of article 2 (2) of the 1 letter (a) the law č. 525/2010 Z. z. on the granting of subsidies under the authority of the Ministry health in Slovakia republics to support research and development in mean health |
|||
|
5.3. National support for science and research in the field of ZCH |
2016 – 2020 |
Support research projects, i.e. slovakia involvement in e-rare project and to many other international research projects |
MZ SR | MZ SR | ||||
|
6. Data collection on patients with ZCH, and creation registry of the ZCH |
6.1. Virtual project the national registry of the ZCH, drawn up on the basis of cooperation of NCZI and OS |
2017 |
Implementation of the pilot project |
MZ SR, NCZI |
OS, SLS | MZ SR | 40 000,00 | |
|
7. Care on quality of life social inclusion patients with ZCH (support and strengthening PO for ZCH in SLOVAKIA) |
7.1. Support for PO activities local and national level, awareness raising both lay and professional public |
2016 – 2020 |
Internet portals, Media (electronic) i print), Seminars, Lectures, Periodicals, flyers, Reconditioning stays, associated with education, Workshops (examples of good - |
SAZCH, PO |
Commission of MZ SR, OS |
Multi-source financing, public sponsors private partnership |
||
|
7.2. Support for action international level, international cooperation |
2016 – 2020 |
Participation of SAS in Commission of MZ SR |
SAZCH |
PO, Commission of MZ SR, OS, LF, FAFUK |
Multi-source financing, public sponsors private partnership |
|||
|
8. Interministerial cooperation in issues ZCH and Departmental commission |
8.1. Coordination of implementation resort activities action plans for the period years 2015 - 2020 |
2016 – 2020 |
Action by the Commission MZ SR v follow-up cEG RD meetings |
MZ SR | Commission of MZ SR |
Under the Statute of the Commission MZ SR |
||
|
9. Foreign cooperation in zCH areas |
9.1. Support for international cooperation in the field of FCH |
2016 – 2020 |
Participation of members Commission of MZ SR, or others specialists decisive international activities |
MZ SR |
Commission of MZ SR, OS, SAZCH, NCZI, WHO |
MZ SR | ||
|
TOTAL |
100 000,00 | 150 000,00 | ||||||
|
TOTAL 2016 and 2017 |
250 000,00 | |||||||
Explanatory notes to the following abbreviations:
ArrayCGH Array comparative genomic hybridization
CEG RD Commission Expert Group on Rare Diseases
DFNsP BA Children's Faculty Hospital with Polyclinic Bratislava, II. children's clinic
DMP Children's metabolic disorders
EUROORDIS European Organisation for Rare Diseases
FAFUK Faculty of Pharmacy of Comenius University in Bratislava
FNsP FDR BB Faculty Hospital with Polyclinic F. D. Roosevelta Banská Bystrica
Commission of MZ SR Commission of the Ministry of Health of the Slovak Republic for Rare Diseases (Rare Diseases, RD)
LF Medical faculties
MZ SR Ministry of Health of the Slovak Republic
NCZI National Health Information Centre
NGS Next generation sequence
ORPHANET The reference portal for information on rare diseases and orphan drugs
OS Professional companies
PO Patient organisations
SAZCH Slovak Alliance of Rare Diseases
SCN SR Screening center of newborns in the Slovak Republic
SGPS Slovak Gynaecological and Birth Society
SLK Slovak Medical Chamber
SLS Slovak Medical Society
SSLG Slovak Society of Medical Genetics
SZU Slovak Medical University in Bratislava
NUKL State Institute for Medicinal Products Control
TERRITORY Health Care Supervisory Authority
ZCH Rare Diseases
ZP Health insurance undertakings