The patient experience of CHAPLE disease: results from interviews conducted as part of a clinical trial for an ultra-rare condition

Authors: Leighann Litcher-Kelly, Ahmet Ozen, Sarah Ollis, Hagit Baris Feldman, Andrew Yaworsky, Paolo Medrano, Voranush Chongsrisawat, Lorah Perlee, Marisa Walker, Sharanya Pradeep, Diane M. Turner-Bowker, Alina Kurolap, Orly Eshach Adiv, Michael J. Lenardo, Olivier A. Harari, Jessica J. Jalbert

Source: Orphanet Journal of Rare Diseases, Vol 20, Iss 1, Pp 1-9 (2025)

Subject Terms: CHAPLE, Within-trial interviews, Pozelimab, HRQoL, Medicine

File Description: electronic resource

Relation: https://doaj.org/toc/1750-1172

Access URL: https://doaj.org/article/e5e8d52a4f624c01aea0787b5382e8f7

Pozelimab for CHAPLE disease: results from in-trial interviews and clinical outcome assessments

Authors: Leighann Litcher-Kelly, Ahmet Ozen, Sarah Ollis, Hagit Baris Feldman, Andrew Yaworsky, Paolo Medrano, Voranush Chongsrisawa, Taylor Brackin, Lorah Perlee, Marisa Walker, Sharanya Pradeep, Michael J. Lenardo, Olivier A. Harari, Jessica J. Jalbert

Source: Orphanet Journal of Rare Diseases, Vol 19, Iss 1, Pp 1-15 (2024)

Subject Terms: (3–10): CHAPLE disease, COA, Open-label trial, Pozelimab, Within-trial interviews, Medicine

File Description: electronic resource

Relation: https://doaj.org/toc/1750-1172

Access URL: https://doaj.org/article/f82a2fd52091428c9e80233cbb076e5b

Validation of the novel Eosinophilic Esophagitis Impact Questionnaire

Authors: Eilish McCann, Mirna Chehade, Jonathan M. Spergel, Andrew Yaworsky, Tara Symonds, Jonathan Stokes, Sarette T. Tilton, Xian Sun, Siddhesh Kamat

Source: Journal of Patient-Reported Outcomes, Vol 7, Iss 1, Pp 1-10 (2023)

Subject Terms: Public aspects of medicine, RA1-1270

File Description: electronic resource

Relation: https://doaj.org/toc/2509-8020

Access URL: https://doaj.org/article/1b7481e2e558427caf083d9f4e61fcd6

Physician experience with once-weekly somatrogon versus once-daily rhGH regimen in pediatric patients with growth hormone deficiency: a cross-sectional survey of physicians from the global phase 3 study

Authors: Roy Gomez, Roger Lamoureux, Diane M. Turner-Bowker, Jane Loftus, Mohamad Maghnie, Bradley S. Miller, Michel Polak, Andrew Yaworsky

Source: Frontiers in Endocrinology, Vol 14 (2023)

Subject Terms: growth hormone deficiency, long-acting growth hormone, once-weekly injection regimen, pediatric endocrinology, somatrogon, somatropin, Diseases of the endocrine glands. Clinical endocrinology, RC648-665

File Description: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fendo.2023.1254424/full; https://doaj.org/toc/1664-2392

Access URL: https://doaj.org/article/c25dfd24fe344bf4bef41ceea8b433db

Development and content validation of the Pediatric Oral Medicines Acceptability Questionnaires (P-OMAQ): patient-reported and caregiver-reported outcome measures

Authors: Diane M. Turner-Bowker, Kristina An Haack, Meaghan Krohe, Andrew Yaworsky, Norma Vivas, Masami Kelly, Godhuli Chatterjee, Emily Chaston, Erin Mann, Matthew Reaney

Source: Journal of Patient-Reported Outcomes, Vol 4, Iss 1, Pp 1-18 (2020)

Subject Terms: Acceptability, Pediatric oral medicines, Oral formulations, Questionnaires, Clinical outcome assessments, Caregivers, Public aspects of medicine, RA1-1270

File Description: electronic resource

Relation: http://link.springer.com/article/10.1186/s41687-020-00246-1; https://doaj.org/toc/2509-8020

Access URL: https://doaj.org/article/11da081994464c44b9d955157625df17

Understanding patient and caregiver perspectives using a dyad approach for data collection: A systematic review of the literature

Authors: Jane Loftus, Andrew Yaworsky, Diane Turner-Bowker, Andrew Palladino, Roger Lamoureux, Emily Love, Andreas Pleil

Source: Patient Experience Journal, Vol 9, Iss 2 (2022)

Subject Terms: clinical outcome assessment, data collection method, pediatric, dyad, caregiver, shared experience, Medicine (General), R5-920, Public aspects of medicine, RA1-1270

File Description: electronic resource

Relation: https://pxjournal.org/journal/vol9/iss2/11; https://doaj.org/toc/2372-0247

Access URL: https://doaj.org/article/66bff3494d504723ad2e2a3b00d94c60

Experience of switching from a daily to a less frequent administration of injection treatments

Authors: Jane Loftus, Andrew Yaworsky, Carl L. Roland, Diane Turner-Bowker, Megan McLafferty, Sylvia Su, Roger E. Lamoureux

Source: PLoS ONE, Vol 17, Iss 11 (2022)

Subject Terms: Medicine, Science

File Description: electronic resource

Relation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9710744/?tool=EBI; https://doaj.org/toc/1932-6203

Access URL: https://doaj.org/article/92e324e772854a0c95d9448f97b50fa0

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