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Publications
Williams V, DeMuro Romano C, Finelli L, Qin S, Saretsky TL, Ma J, Lewis S, Phillips M, Osborne RH, Norquist JM. Psychometric evaluation of the respiratory syncytial virus infection, intensity and impact questionnaire (RSV-iiiQ) in adults. Health Qual Life Outcomes. 2024 Feb 20;22(1):19. doi: 10.1186/s12955-023-02174-2
Forsythe E, Haws RM, Argente J, Beales P, Martos-Moreno GA, Dollfus H, Chirila C, Gnanasakthy A, Buckley BC, Mallya UG, Clement K, Haqq AM. Quality of life improvements following one year of setmelanotide in children and adult patients with Bardet-Biedl syndrome: phase 3 trial results. Orphanet J Rare Dis. 2023 Jan 16;18(1):12. doi: 10.1186/s13023-022-02602-4
Kuhnen P, Wabitsch M, von Schnurbein J, Chirila C, Mallya UG, Callahan P, Gnanasakthy A, Poitou C, Krabusch PM, Stewart M, Clement K. Quality of life outcomes in two phase 3 trials of setmelanotide in patients with obesity due to LEPR or POMC deficiency. Orphanet J Rare Dis. 2022 Feb 5;17(1):38. doi: 10.1186/s13023-022-02186-z
Noel E, Dussol B, Lacombe D, Bedreddine N, Fouilhoux A, Ronco P, Genevaz D, Bekri S, Hagege A, Dupuis-Simeon F, Derrien Ansquer V, Germain DP, Lidove O. Treatment needs and expectations for Fabry disease in France: development of a new Patient Needs Questionnaire. Orphanet J Rare Dis. 2019 Dec 4;14(1):284. doi: 10.1186/s13023-019-1254-7
Paquin RS, Fischer R, Mansfield C, Mange B, Beaverson K, Ganot A, Martin AS, Morris C, Rensch C, Ricotti V, Russo LJ, Sadosky A, Smith EC, Peay H. Priorities when deciding on participation in early-phase gene therapy trials for Duchenne muscular dystrophy: a best–worst scaling experiment in caregivers and adult patients. Orphanet J Rare Dis. 2019 May 9;14(1):102. doi: 10.1186/s13023-019-1069-6
Cima K, Twiss J, Speich R, McKenna SP, Grunig E, Kahler CM, Ehlken N, Treder U, Crawford SR, Huber LC, Ulrich S. The German adaptation of the Cambridge pulmonary hypertension outcome review (CAMPHOR). Health Qual Life Outcomes. 2012 Sep 13;10:110. doi: 10.1186/1477-7525-10-110
Arbuckle R, Atkinson MJ, Clark M, Abetz L, Lohs J, Kuhagen I, Harness J, Draelos Z, Thiboutot D, Blume-Peytavi U, Copley-Merriman K. Patient experiences with oily skin: the qualitative development of content for two new patient reported outcome questionnaires. Health Qual Life Outcomes. 2008 Oct 16;6:80. doi: 10.1186/1477-7525-6-80.