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Hermann Eichler, Azusa Nagao, John Waller & Alexander Stuber. (2023) Real-World Experience of People with Hemophilia A Receiving Turoctocog Alfa Pegol (N8-GP): Results from a Patient Experience Survey. Patient Preference and Adherence 17, pages 3001-3014.
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Jennifer Quinn, Kathleen A Delaney, Wing Yen Wong, Wolfgang Miesbach & Monika Bullinger. (2022) Psychometric Validation of the Haemo-QOL-A in Participants with Hemophilia A Treated with Gene Therapy. Patient Related Outcome Measures 13, pages 169-180.
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P. McLaughlin, M. Hurley, P. Chowdary, D. Stephensen & K. Khair. (2022) The experiences and beliefs of people with severe haemophilia and healthcare professionals on pain management, and their views of using exercise as an aspect of intervention: a qualitative study. Disability and Rehabilitation 44:26, pages 8420-8428.
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Atanas Banchev, Angelika Batorova, Barbara Faganel Kotnik, Csongor Kiss, Gediminas Puras, Ester Zapotocka & Silva Zupancic-Salek. (2021) A Cross-National Survey of People Living with Hemophilia: Impact on Daily Living and Patient Education in Central Europe. Patient Preference and Adherence 15, pages 871-883.
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Tyler W Buckner, Robert Sidonio Jr, Michelle Witkop, Christine Guelcher, Susan Cutter, Neeraj N Iyer & David L Cooper. (2019) Correlations between patient-reported outcomes and self-reported characteristics in adults with hemophilia B and caregivers of children with hemophilia B: analysis of the B-HERO-S study. Patient Related Outcome Measures 10, pages 299-314.
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Susan Cutter, Christine Guelcher, Susan Hunter, Dawn Rotellini, Spencer Dunn & David L Cooper. (2019) Mild-severe hemophilia B impacts relationships of US adults and children with hemophilia B and their families: results from the B-HERO-S study. Patient Related Outcome Measures 10, pages 257-266.
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Michelle L Witkop, Angela Lambing, Cynthia D Nichols, James E Munn, Terry L Anderson & Bartholomew J Tortella. (2019) Interrelationship between depression, anxiety, pain, and treatment adherence in hemophilia: results from a US cross-sectional survey. Patient Preference and Adherence 13, pages 1577-1587.
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Tyler W Buckner, Michael Wang, David L Cooper, Neeraj N Iyer & Christine L Kempton. (2017) Known-group validity of patient-reported outcome instruments and hemophilia joint health score v2.1 in US adults with hemophilia: results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study. Patient Preference and Adherence 11, pages 1745-1753.
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Michael Wang, Katharine Batt, Craig Kessler, Anne Neff, Neeraj N Iyer, David L Cooper & Christine L Kempton. (2017) Internal consistency and item-total correlation of patient-reported outcome instruments and hemophilia joint health score v2.1 in US adult people with hemophilia: results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study. Patient Preference and Adherence 11, pages 1831-1839.
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Gry Velvin, Brede Dammann, Trond Haagensen, Heidi Johansen, Hilde Strømme, Amy Østertun Geirdal & Trine Bathen. (2023) Work participation in adults with rare genetic diseases - a scoping review. BMC Public Health 23:1.
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Pratima Chowdary, Francis Nissen, Tom Burke, Martynas Aizenas, Tünde Czirok, Harpal Dhillon & Jamie O'Hara. (2023) The humanistic and economic burden of problem joints for children and adults with moderate or severe haemophilia A: Analysis of the CHESS population studies. Haemophilia 29:3, pages 753-760.
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Katarina Steen Carlsson, Bent Winding, Jan Astermark, Fariba Baghaei, Elisabeth Brodin, Eva Funding, Margareta Holmström, Klaus Österholm, Sofia Bergenstråle & Stefan Lethagen. (2023) High use of pain, depression, and anxiety drugs in hemophilia: more than 3000 people with hemophilia in an 11-year Nordic registry study. Research and Practice in Thrombosis and Haemostasis 7:2, pages 100061.
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Marilyn Jean Manco-Johnson & Beth Boulden Warren. (2022) Long-term prophylaxis: what are our options and how to define success?. Hematology 2022:1, pages 579-585.
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Ngoc Anh Thu Nguyen, Pascal Auquier, Any Beltran Anzola, Roseline d'Oiron, Christine Biron‐Andréani, Anne Lienhart, Antoine Rauch, Karine Baumstarck, Mohamed Boucekine, Vanessa Milien, Natacha Rosso‐Delsemme, Clemence Tabele, Nicolas Giraud, Thomas Sannié, Hervé Chambost, Noémie Resseguier, Thierry Lambert, Céline Falaise, Jean‐François Schved, Claude Negrier, Jenny Goudemand, Sophie Susen, Bénédicte Wibaut, Marie Castet Sabine, Dominique Desprez, Annie Harroche, Natalie Stieltjes, Annie Borel‐Derlon, Marc Trossaërt, Amandine Celli, Benoît Guillet, Sophie Bayart, Marie‐Anne Bertrand, Alexandra Fournel, Guillaume Mourey, Valérie Gay, Pierre Chamouni, Emmanuelle de Raucourt, Birgit Frotscher, Michèle Martin, Mathieu Puyade, Brigitte Tardy, Stéphane Vanderbecken, Fabienne Genre‐Volot, Philippe Nguyen, Benoît Polack, Raphaël Marlu, Caroline Oudot‐Challard, Stéphane Girault, Annelise Voyer, Aurélien Lebreton, Abel Hassoun, Philippe Moreau & Pierre‐Simon Rohrlich. (2022) Occupational integration of adults with severe haemophilia (INTHEMO): A study based on the FranceCoag registry. Haemophilia 28:6, pages 962-976.
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Katarina Steen Carlsson, Bent Winding, Jan Astermark, Fariba Baghaei, Elisabeth Brodin, Eva Funding, Margareta Holmström, Klaus Österholm, Sofia Bergenstråle, Emelie Andersson & Stefan Lethagen. (2022) Pain, depression and anxiety in people with haemophilia from three Nordic countries: Cross‐sectional survey data from the MIND study. Haemophilia 28:4, pages 557-567.
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Jennifer R. Newman, Nancy Durben, Kimberly Baumann, Angela Y. Lambing, Cynthia D. Nichols, Michelle Witkop, Maria E. Santaella & Tyler W. Buckner. (2022) Physical therapy within US HTCs: A multicentre survey of utilization, practice patterns and pain management approaches. Haemophilia 28:2, pages 343-350.
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Roberto Ucero‐Lozano, José Antonio López‐Pina, Alba Ortiz‐Pérez & Rubén Cuesta‐Barriuso. (2021) The relationship between chronic pain and psychosocial aspects in patients with haemophilic arthropathy. A cross‐sectional study. Haemophilia 28:1, pages 176-182.
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Mairead O’Donovan, Eimear Quinn, Kate Johnston, Evelyn Singleton, Julie Benson, Brian O'Mahony, Declan Noone, Cleona Duggan, Ruth Gilmore, Kevin Ryan, James S. O'Donnell, Niamh M. O’Connell & Johnny Mahlangu. (2021) Recombinant factor IX‐Fc fusion protein in severe hemophilia B: Patient‐reported outcomes and health‐related quality of life. Research and Practice in Thrombosis and Haemostasis 5:7, pages e12602.
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Kathy Mulder, Erin McCabe, Karen Strike & JoAnn Nilson. (2021) Developing clinical practice guidelines for physiotherapists working with people with inherited bleeding disorders. Haemophilia 27:4, pages 674-682.
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Monika Bullinger, Diandra Latibeaudiere Gardner, Hannah B Lewis, Wolfgang Miesbach, Sandra Nolte, Jamie O’Hara, Brian O’Mahony, Debra Pollard, Mark Skinner & Jennifer Quinn. (2021) The potential impact of gene therapy on health-related quality of life (HRQoL) domains in haemophilia. The Journal of Haemophilia Practice 8:1, pages 56-68.
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Michelle Witkop, Michael Wang, Grace Hernandez, Michael Recht, Kim Baumann & David L. Cooper. (2021) Impact of haemophilia on patients with mild‐to‐moderate disease: Results from the P‐FiQ and B‐HERO‐S studies. Haemophilia 27:S1, pages 8-16.
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Nathan Visweshwar, Yumeng Zhang, Hazina Joseph, Michael Jaglal & Irmel Ayala. (2020) Chronic pain in patients with hemophilia: is it preventable?. Blood Coagulation & Fibrinolysis 31:6, pages 346-352.
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Joaquín Calatayud, Sofía Pérez-Alenda, Juan J Carrasco, Carlos Cruz-Montecinos, Lars L Andersen, Santiago Bonanad, Felipe Querol, Juan E Megías-Vericat & José Casaña. (2020) Safety and Effectiveness of Progressive Moderate-to-Vigorous Intensity Elastic Resistance Training on Physical Function and Pain in People With Hemophilia. Physical Therapy 100:9, pages 1632-1644.
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Laurie J. Brown, Hai A. La, Jinjing Li, Matthias Brunner, Martin Snoke & Annette M. Kerr. (2020) The societal burden of haemophilia A. I – A snapshot of haemophilia A in Australia and beyond. Haemophilia 26:S5, pages 3-10.
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Beth Boulden Warren, Dianne Thornhill, Jill Stein, Michael FadellJ. David IngramSharon Funk, Kristi L. NortonHeidi D. LaneCarolyn M. BennettAmy Dunn, Michael Recht, Amy Shapiro & Marilyn J. Manco-Johnson. (2020) Young adult outcomes of childhood prophylaxis for severe hemophilia A: results of the Joint Outcome Continuation Study. Blood Advances 4:11, pages 2451-2459.
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