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S. Eylon, E. Kornitzer, C. Wever, A. Rigbi, P. L. Weiss & S. Meyer. (2023) Reducing fracture incidence in children with osteogenesis imperfecta: contribution of orthotics to bisphosphonates treatment. Disability and Rehabilitation 0:0, pages 1-6.
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Diane Macdonald, Evianne L. Van Gijn-Grosvenor, Melinda Montgomery, Angela Dew & Katherine Boydell. (2022) ‘Through my eyes’: feminist self-portraits of Osteogenesis Imperfecta as arts-based knowledge translation. Visual Studies 37:4, pages 244-256.
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Articles from other publishers (18)
Emma France, Isabelle Uny, Ruth Turley, Katie Thomson, Jane Noyes, Abbie Jordan, Liz Forbat, Line Caes & Mayara Silveira Bianchim. (2023) A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments. Cochrane Database of Systematic Reviews 2023:10.
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W. Conor Rork, Alyssa G. Hertz, Andrew D. Wiese, Kristin M. Kostick, Dianne Nguyen, Sophie C. Schneider, Whitney S. Shepherd, Hannah Cho, Chaya N. Murali, Brendan Lee, V. Reid Sutton & Eric A. Storch. (2023) A qualitative exploration of patient perspectives on psychosocial burdens and positive factors in adults with osteogenesis imperfecta. American Journal of Medical Genetics Part A 191:9, pages 2267-2275.
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Hatice Uzsen, Dilek Zengin & Zumrut Basbakkal. (2023) The experiences of the families with children diagnosed with osteogenesis imperfecta: A Qualiative study in Turkey. Journal of Pediatric Nursing.
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Susanne Wehrli, Marianne Rohrbach & Markus Andreas Landolt. (2023) Quality of life of pediatric and adult individuals with osteogenesis imperfecta: a meta-analysis. Orphanet Journal of Rare Diseases 18:1.
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Maria Rapoport, Michael B. Bober, Cathleen Raggio, Lena Lande Wekre, Frank Rauch, Ingunn Westerheim, Tracy Hart, Taco van Welzenis, Arun Mistry, James Clancy, Lucy Booth, Samantha Prince & Oliver Semler. (2023) The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review. Orphanet Journal of Rare Diseases 18:1.
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Taylor E. Dlesk & Karen Larimer. (2023) Multimodal Pain Management of Children Diagnosed with Osteogenesis Imperfecta: An Integrative Literature Review. Pain Management Nursing 24:1, pages 102-110.
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Yi Wen Wang, Franco A Carnevale, Maria Ezcurra, Khadidja Chougui, Claudette Bilodeau, Sophia Siedlikowski & Argerie Tsimicalis. (2022) The moral experiences of children with osteogenesis imperfecta. Nursing Ethics 29:7-8, pages 1773-1791.
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Laia Llubes‐Arrià, Montserrat Sanromà‐Ortíz, Alba Torné‐Ruiz, Elena Carillo‐Álvarez, Judith García‐Expósito & Judith Roca. (2021) Emotional experience of the diagnostic process of a rare disease and the perception of support systems: A scoping review. Journal of Clinical Nursing 31:1-2, pages 20-31.
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Melissa Hill, Jennifer Hammond, Mithila Sharmin, Celine Lewis, Mark Heathfield, Belinda Crowe, Cecilia Götherström, Lyn S. Chitty & Catherine DeVile. (2022) Living with osteogenesis imperfecta: A qualitative study exploring experiences and psychosocial impact from the perspective of patients, parents and professionals. Disability and Health Journal 15:1, pages 101168.
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Yongjie Lai, Wenchao Lu, Huijia Mao, Yueyang Zhang, Wai-kit Ming & Yibo Wu. (2021) Knowledge, attitude and practices regarding health self-management among patients with osteogenesis imperfecta in China: an online cross-sectional survey. BMJ Open 11:9, pages e046286.
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E. Brizola, G. Adami, G. I. Baroncelli, M. F. Bedeschi, P. Berardi, S. Boero, M. L. Brandi, L. Casareto, E. Castagnola, P. Fraschini, D. Gatti, S. Giannini, M. V. Gonfiantini, V. Landoni, A. Magrelli, G. Mantovani, M. B. Michelis, L. A. Nasto, L. Panzeri, E. Pianigiani, A. Scopinaro, L. Trespidi, A. Vianello, G. Zampino & L. Sangiorgi. (2020) Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic. Orphanet Journal of Rare Diseases 15:1.
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Koert Gooijer, Arjan G J Harsevoort, Fleur S Dijk, Hendrikje (Rik) Withaar, Guus J M Janus & Anton A M Franken. (2020) A Baseline Measurement of Quality of Life in 322 Adults With Osteogenesis Imperfecta. JBMR Plus 4:12.
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Shengfeng Wang, Lili Liu, Xuefeng Lai, Tanxin Liu, Jingnan Feng, Lu Xu, Jiangjie Zhou, Guoyu Zhou, Lu Chen & Siyan Zhan. (2020) Assessment of quality, readability and endorsement of online information on WeChat official accounts for patients with rare neurological diseases: a cross-sectional study (Preprint). JMIR Medical Informatics.
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Paola Cardinali, Laura Migliorini & Nadia Rania. (2019) The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions. Frontiers in Psychology 10.
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Melissa Hill, Celine Lewis, Megan Riddington, Belinda Crowe, Catherine DeVile, Anna L. David, Oliver Semler, Magnus Westgren, Cecilia Götherström & Lyn S Chitty. (2019) Stakeholder views and attitudes towards prenatal and postnatal transplantation of fetal mesenchymal stem cells to treat Osteogenesis Imperfecta. European Journal of Human Genetics 27:8, pages 1244-1253.
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Margot A. Lazow, Sarah S. Jaser, Erin C. Cobry, Melissa D. Garganta & Jill H. Simmons. (2019) Stress, Depression, and Quality of Life Among Caregivers of Children With Osteogenesis Imperfecta. Journal of Pediatric Health Care 33:4, pages 437-445.
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Melissa Hill, Celine Lewis, Megan Riddington, Belinda Crowe, Catherine DeVile, Cecilia Götherström & Lyn Chitty. (2019) Exploring the impact of Osteogenesis Imperfecta on families: A mixed-methods systematic review. Disability and Health Journal 12:3, pages 340-349.
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Gunilla Pousette Lundgren, Tove Hasselblad, Anna Johansson, Anna Johansson & Göran Dahllöf. (2019) Experiences of Being a Parent to a Child with Amelogenesis Imperfecta. Dentistry Journal 7:1, pages 17.
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