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Recommendations for Improving the Quality of Rare Disease Registries.
Kodra Y, Weinbach J, Posada-de-la-Paz M, Coi A, Lemonnier SL, van Enckevort D, Roos M, Jacobsen A, Cornet R, Ahmed SF, Bros-Facer V, Popa V, Van Meel M, Renault D, von Gizycki R, Santoro M, Landais P, Torreri P, Carta C, Mascalzoni D, Gainotti S, Lopez E, Ambrosini A, Müller H, Reis R, Bianchi F, Rubinstein YR, Lochmüller H, Taruscio D. Kodra Y, et al. Among authors: von gizycki r. Int J Environ Res Public Health. 2018 Aug 3;15(8):1644. doi: 10.3390/ijerph15081644. Int J Environ Res Public Health. 2018. PMID: 30081484 Free PMC article.
Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient-Centered Special Interest Group.
Harrington RL, Hanna ML, Oehrlein EM, Camp R, Wheeler R, Cooblall C, Tesoro T, Scott AM, von Gizycki R, Nguyen F, Hareendran A, Patrick DL, Perfetto EM. Harrington RL, et al. Among authors: von gizycki r. Value Health. 2020 Jun;23(6):677-688. doi: 10.1016/j.jval.2020.01.019. Epub 2020 May 23. Value Health. 2020. PMID: 32540224 Free article.
[Patient participation in medical care, taking rare retinal degenerations as examples].
Brunsmann F, von Gizycki R, Rybalko A, Hildebrandt AG, Rüther K. Brunsmann F, et al. Among authors: von gizycki r. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2007 Dec;50(12):1494-501. doi: 10.1007/s00103-007-0383-7. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2007. PMID: 18038106 Review. German.
Acceptability of prenatal diagnosis for retinitis pigmentosa.
Pawlowitzki IH, Rüther K, Brunsmann F, von Gizycki R. Pawlowitzki IH, et al. Among authors: von gizycki r. Lancet. 1986 Dec 13;2(8520):1394-5. doi: 10.1016/s0140-6736(86)92033-7. Lancet. 1986. PMID: 2878250 No abstract available.