This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
European Commission. European Health Data Space. Available from https://ec.europa.eu/health/ehealth/dataspace_en (accessed 12 November 2021).European CommissionAvailable from https://ec.europa.eu/health/ehealth/dataspace_en (accessed 12 November 2021).Search in Google Scholar
European Commission. Digital Health and Care: Transformation of health and care in the digital single market – Harnessing the potential of data to empower citizens and build a healthier society. [Infographic]. 2018. Available from https://ec.europa.eu/health/sites/default/files/ehealth/docs/2018_ehealth_infographic_en.pdf (accessed 12 November 2021).European Commission2018Available from https://ec.europa.eu/health/sites/default/files/ehealth/docs/2018_ehealth_infographic_en.pdf (accessed 12 November 2021).Search in Google Scholar
Orphanet. Rare disease registries in Europe. Orphanet Report Series: Rare Diseases collection. September 2020. Available from https://www.orpha.net/orphacom/cahiers/docs/GB/Registries.pdf (accessed 12 November 2021).OrphanetSeptember2020Available from https://www.orpha.net/orphacom/cahiers/docs/GB/Registries.pdf (accessed 12 November 2021).Search in Google Scholar
Dolan G, Makris M, Bolton-Maggs PHB, Rowell JA. Enhancing haemophilia care through registries. Haemophilia 2014; 20: 121–129. doi: 10.1111/hae.12406.DolanGMakrisMBolton-MaggsPHBRowellJAEnhancing haemophilia care through registries20142012112910.1111/hae.1240624762287Open DOISearch in Google Scholar
Ljung RCR. Registries and databases – A European perspective. Haemophilia 2020; 26: 26–28. doi: 10.1111/hae.13920.LjungRCRRegistries and databases – A European perspective202026262810.1111/hae.1392032356342Open DOISearch in Google Scholar
Nicholson N, Perego A. Interoperability of population-based patient registries. J Biomed Inform X 2020; 112 (supplement): 100074. doi: 10.1016/j.yjbinx.2020.100074.NicholsonNPeregoAInteroperability of population-based patient registries2020112supplement10007410.1016/j.yjbinx.2020.10007434417011Open DOISearch in Google Scholar
Hay CRM, Shima M, Makris M, et al. Challenges and key lessons from the design and implementation of an international haemophilia registry supposed by a pharmaceutical company. Haemophilia 2020; 26: 966–974. doi: 10.1111/hae.14144.HayCRMShimaMMakrisMChallenges and key lessons from the design and implementation of an international haemophilia registry supposed by a pharmaceutical company20202696697410.1111/hae.14144789435533094894Open DOISearch in Google Scholar
Magajne M, Meglič M (eds). Methodological guidelines and recommendations for efficient and rational governance of patient registries. Cross-border Patient Registries Initiative (PARENT). Slovenia: National Institute of Public Health; 2015. Available from https://ec.europa.eu/health/sites/default/files/ehealth/docs/patient_registries_guidelines_en.pdf (accessed 15 November 2021).MagajneMMegličM(eds).SloveniaNational Institute of Public Health2015Available from https://ec.europa.eu/health/sites/default/files/ehealth/docs/patient_registries_guidelines_en.pdf (accessed 15 November 2021).Search in Google Scholar
European Medicines Agency Patient Registries Initiative. Report on haemophilia registries workshop 8 June 2018. EMA/487643/2018. 28 September 2018. Available from https://www.ema.europa.eu/en/documents/report/report-haemophilia-registries-workshop_en.pdf (accessed 15 November 2021).European Medicines Agency Patient Registries Initiative28September2018Available from https://www.ema.europa.eu/en/documents/report/report-haemophilia-registries-workshop_en.pdf (accessed 15 November 2021).Search in Google Scholar
ECFS Patient Registry. Registry variables and definitions. Updated 21 October 2021. Available from https://www.ecfs.eu/projects/ecfs-patient-registry/variables-definitions (accessed 16 November 2021).ECFS Patient RegistryAvailable from https://www.ecfs.eu/projects/ecfs-patient-registry/variables-definitions (accessed 16 November 2021).Search in Google Scholar
Grady C, Rubinstein YR, Groft SC. Informed consent and patient registry for the rare disease community: Editorial. Contemp Clin Trials 2012; 33(1): 3–4. doi: 11.1016/j.cct.2011.10.005.GradyCRubinsteinYRGroftSCInformed consent and patient registry for the rare disease community: Editorial20123313411.1016/j.cct.2011.10.005Open DOISearch in Google Scholar
Blumenthal S. Improving interoperability between registries and EHRs. AMIA Jt Summits Transl Sci Proc 2018; 2017: 20–25.BlumenthalSImproving interoperability between registries and EHRs201820172025Search in Google Scholar
Makady A, Ham RT, de Boer A, et al. GetReal Workpackage 1. Policies for use of real-world data in health technology assessment (HTA): A comparative study of six HTA agencies. Value Health 2017; 20(4): 520–532. doi: 10.1016/j.jval.2016.12.003.MakadyAHamRTde BoerAGetReal Workpackage 1. Policies for use of real-world data in health technology assessment (HTA): A comparative study of six HTA agencies201720452053210.1016/j.jval.2016.12.00328407993Open DOISearch in Google Scholar
Makady A, van Veelen A, Jonsson P, et al. Using real-world data in health technology assessment (HTA) practice: A comparative study of five HTA agencies. Pharmacoeconomics 2018; 36(3): 359–368. doi: 10.1007/s40273-017-0596-z.MakadyAvan VeelenAJonssonPUsing real-world data in health technology assessment (HTA) practice: A comparative study of five HTA agencies201836335936810.1007/s40273-017-0596-z583459429214389Open DOISearch in Google Scholar
Santanello N, Largent J, Myers E, et al. Engaging patients as partners throughout the registry life cycle. In: Gliklich RE, Dreyer NA, Leavy MB, et al. (eds). 21st Century Patient Registries: Registries for Evaluating Patient Outcomes: A User's Guide. 3rd Edition, Addendum [Internet]. Rockville (MD): Agency for Healthcare Research and Quality (US); 2018. Available from: https://www.ncbi.nlm.nih.gov/books/NBK493821/ (accessed 16 November 2021).SantanelloNLargentJMyersEEngaging patients as partners throughout the registry life cycleIn:GliklichREDreyerNALeavyMB(eds).3rd EditionAddendum [Internet].Rockville (MD)Agency for Healthcare Research and Quality (US)2018Available from: https://www.ncbi.nlm.nih.gov/books/NBK493821/ (accessed 16 November 2021).Search in Google Scholar
Nelson EC, Dixon-Woods M, Batalden PB, et al. Patient focused registries can improve health, care and science. BMJ 2016; 354: i3319. doi: 10.1136/bmj.i3319.NelsonECDixon-WoodsMBataldenPBPatient focused registries can improve health, care and science2016354i331910.1136/bmj.i3319536761827370543Open DOISearch in Google Scholar
EHC. Think Tank. Available from https://www.ehc.eu/thinktank/ (accessed 12 November 2021).EHCAvailable from https://www.ehc.eu/thinktank/ (accessed 12 November 2021).Search in Google Scholar
Chatham House. Chatham House rule. Available from https://www.chathamhouse.org/about-us/chatham-house-rule (accessed 12 November 2021).Chatham HouseAvailable from https://www.chathamhouse.org/about-us/chatham-house-rule (accessed 12 November 2021).Search in Google Scholar