TY - BOOK PY - 2011 DA - 2011// TI - Work plan in the field of rare diseases in the Republic of Slovenia PB - Ministry of Health of the Republic of Slovenia CY - Ljubljana ID - ref1 ER - TY - BOOK AU - Groselj, U. PY - 2016 DA - 2016// TI - Analysis and development in the field of rare diseases in Slovenia. 6th edition of rare diseases PB - Society of patients with blood diseases of Slovenia CY - Ljubljana ID - Groselj2016 ER - TY - JOUR AU - Valdez, R. AU - Ouyang, L. AU - Bolen, J. PY - 2016 DA - 2016// TI - Public health and rare diseases: oxymoron no more JO - Prev Chronic Dis VL - 13 ID - Valdez2016 ER - TY - BOOK PY - 2014 DA - 2014// TI - Registries for evaluating patient outcomes: a user’s guide PB - Agency for Healthcare Research and Quality CY - Rockville ID - ref4 ER - TY - JOUR AU - Solomon, D. J. AU - Henry, R. C. AU - Hogan, J. G. AU - Amburg, G. H. AU - Taylor, J. PY - 1991 DA - 1991// TI - Evaluation and implementation of public health registries JO - Public Health Rep VL - 106 ID - Solomon1991 ER - TY - JOUR AU - Whicher, D. AU - Philbin, S. AU - Aronson, N. PY - 2018 DA - 2018// TI - An overview of the impact of rare disease characteristics on research methodology JO - Orphanet J Rare Dis VL - 13 UR - https://doi.org/10.1186/s13023-017-0755-5 DO - 10.1186/s13023-017-0755-5 ID - Whicher2018 ER - TY - JOUR AU - Dharssi, S. AU - Wong-Rieger, D. AU - Harold, M. AU - Terry, S. PY - 2017 DA - 2017// TI - Review of 11 national policies for rare diseases in the context of key patient needs JO - Orphanet J Rare Dis VL - 12 UR - https://doi.org/10.1186/s13023-017-0618-0 DO - 10.1186/s13023-017-0618-0 ID - Dharssi2017 ER - TY - BOOK PY - 2009 DA - 2009// TI - Council recommendation of 8 June 2009 on an action in the field of rare diseases (2009/C 151/02) PB - European Commission CY - Brussels ID - ref8 ER - TY - BOOK PY - 2013 DA - 2013// TI - Recommendations on rare disease patient registration and data collection PB - European Commission CY - Brussels ID - ref9 ER - TY - BOOK PY - 2012 DA - 2012// TI - Connecting rare disease researchers worldwide PB - European Commission CY - Brussels ID - ref10 ER - TY - BOOK PY - 2011 DA - 2011// TI - European platform for rare disease registries. Specific objectives PB - European Commission CY - Brussels ID - ref11 ER - TY - JOUR AU - Taruscio, D. AU - Vittozzi, L. AU - Choquet, R. AU - Heimdal, K. AU - Iskrov, G. AU - Kodra, Y. PY - 2015 DA - 2015// TI - National registries of rare diseases in Europe: an overview of the current situation and experiences JO - Public Health Genomics VL - 18 UR - https://doi.org/10.1159/000365897 DO - 10.1159/000365897 ID - Taruscio2015 ER - TY - BOOK PY - 2016 DA - 2016// TI - Resolution on the National Healthcare Plan 2016–2025 (ReNPZV16–25) “together for a healthy society” PB - Ministry of Health of the Republic of Slovenia CY - Ljubljana ID - ref13 ER - TY - STD TI - Healthcare Databases Act. ZZPPZ, Official Gazette of the Republic of Slovenia, No. 65/00, 47/15, 31/18. ID - ref14 ER - TY - JOUR AU - Thomas, D. R. PY - 2006 DA - 2006// TI - A general inductive approach for analyzing qualitative evaluation data JO - Am J Eval VL - 27 UR - https://doi.org/10.1177/1098214005283748 DO - 10.1177/1098214005283748 ID - Thomas2006 ER - TY - BOOK AU - Yin, R. K. PY - 2017 DA - 2017// TI - Case study research and applications: design and methods PB - Sage publications CY - Thousand Oaks ID - Yin2017 ER - TY - JOUR AU - Hsieh, H. F. AU - Shannon, S. E. PY - 2005 DA - 2005// TI - Three approaches to qualitative content analysis JO - Qual Health Res VL - 15 UR - https://doi.org/10.1177/1049732305276687 DO - 10.1177/1049732305276687 ID - Hsieh2005 ER - TY - JOUR AU - Moretti, F. AU - Vliet, L. AU - Bensing, J. AU - Deledda, G. AU - Mazzi, M. AU - Rimondini, M. PY - 2011 DA - 2011// TI - A standardized approach to qualitative content analysis of focus group discussions from different countries JO - Patient Educ Couns VL - 82 UR - https://doi.org/10.1016/j.pec.2011.01.005 DO - 10.1016/j.pec.2011.01.005 ID - Moretti2011 ER - TY - BOOK AU - Zerjav Tansek, M. PY - 2015 DA - 2015// TI - European initiatives in the field of rare diseases. 5th edition of rare diseases PB - Society of Patients with blood diseases of Slovenia CY - Ljubljana ID - Zerjav Tansek2015 ER - TY - BOOK PY - 2014 DA - 2014// TI - NIPH databases 2014 PB - National Institute of Public Health CY - Ljubljana ID - ref20 ER - TY - BOOK PY - 2015 DA - 2015// TI - About rare cancers PB - Institute of Oncology CY - Ljubljana ID - ref21 ER - TY - BOOK PY - 2016 DA - 2016// TI - Rare diseases PB - Centre for Undiagnosed Rare Diseases CY - Ljubljana ID - ref22 ER - TY - BOOK PY - 2018 DA - 2018// TI - Rare diseases and treatment PB - National contact point for rare diseases CY - Ljubljana ID - ref23 ER - TY - JOUR AU - Choquet, R. AU - Maaroufi, M. AU - Carrara, A. AU - Messiaen, C. AU - Luigi, E. AU - Landais, P. PY - 2015 DA - 2015// TI - A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research JO - J Am Med Inform Assoc JAMIA VL - 22 UR - https://doi.org/10.1136/amiajnl-2014-002794 DO - 10.1136/amiajnl-2014-002794 ID - Choquet2015 ER - TY - JOUR AU - Ayme, S. AU - Bellet, B. AU - Rath, A. PY - 2015 DA - 2015// TI - Rare diseases in ICD11: making rare diseases visible in health information systems through appropriate coding JO - Orphanet J Rare Dis VL - 10 UR - https://doi.org/10.1186/s13023-015-0251-8 DO - 10.1186/s13023-015-0251-8 ID - Ayme2015 ER - TY - BOOK PY - 2018 DA - 2018// TI - International classification of diseases, 11th revision (ICD-11). ICD-11 is here PB - World Health Organization CY - Geneva ID - ref26 ER - TY - BOOK PY - 2017 DA - 2017// TI - Monitoring of the hospital treatments PB - National Institute of Public Health CY - Ljubljana ID - ref27 ER - TY - BOOK PY - 2016 DA - 2016// TI - Work programme of the government of the Republic of Slovenia for 2016 PB - Government of the Republic of Slovenia CY - Ljubljana ID - ref28 ER - TY - BOOK PY - 1995 DA - 1995// TI - Directive no. 95/46/EC of the European Parliament and of the council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data PB - European Commission CY - Brussels ID - ref29 ER - TY - STD TI - Personal Data Protection Act. ZVOP-1, Official Gazette of the Republic of Slovenia, No. 94/07. ID - ref30 ER - TY - STD TI - European Commission. General data protection regulation (GDPR). Regulation (EU) 2016/679 of the European Parliament and of the council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing directive 95/46/EC (general data protection regulation). Brussels: European Commission; 2016. ID - ref31 ER - TY - JOUR AU - Taruscio, D. AU - Mollo, E. AU - Gainotti, S. AU - Paz, M. P. AU - Bianchi, F. AU - Vittozzi, L. PY - 2014 DA - 2014// TI - The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration JO - Arch Public Health VL - 72 UR - https://doi.org/10.1186/2049-3258-72-35 DO - 10.1186/2049-3258-72-35 ID - Taruscio2014 ER - TY - JOUR AU - Groft, S. C. PY - 2013 DA - 2013// TI - Rare diseases research: expanding collaborative translational research opportunities JO - Chest J VL - 144 UR - https://doi.org/10.1378/chest.13-0606 DO - 10.1378/chest.13-0606 ID - Groft2013 ER - TY - JOUR AU - Pariser, A. R. AU - Gahl, W. A. PY - 2014 DA - 2014// TI - Important role of translational science in rare disease innovation, discovery, and drug development JO - J Gen Intern Med VL - 29 UR - https://doi.org/10.1007/s11606-014-2881-2 DO - 10.1007/s11606-014-2881-2 ID - Pariser2014 ER - TY - JOUR AU - Groft, S. C. AU - Paz, M. P. PY - 2010 DA - 2010// TI - Rare diseases – avoiding misperceptions and establishing realities: the need for reliable epidemiological data JO - Adv Exp Med Biol VL - 686 UR - https://doi.org/10.1007/978-90-481-9485-8_1 DO - 10.1007/978-90-481-9485-8_1 ID - Groft2010 ER - TY - BOOK PY - 2013 DA - 2013// TI - Rare disease patient registries. Policy fact sheet. EURORDIS – rare diseases Europe PB - European Commission CY - Brussels ID - ref36 ER -