Publications
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Gnanasakthy A, Crawford R, Qin S, Doward L, Rockwood NJ. Advanced patient-reported outcomes. Mastering Patient-Reported Outcomes (PRO) in Drug Development. Presented at the ISPOR 2025; May 13, 2025. Montréal, Canada. Previously presented at the ISPOR Europe 2024.
Frederiksen KS, Hahn-Pedersen J, Crawford R, Morrison R, Jeppesen R, Doward L, Weidner W. Traversing shifting sands-the challenges of caring for someone with Alzheimer's disease and the impact on care partners: social media content analysis. J Med Internet Res. 2025 Feb 18;27:e55468. doi: 10.2196/55468
Gnanasakthy A, Crawford R, Qin S, Doward L, Rockwood NJ. Advanced patient-reported outcomes. Presented at the ISPOR Europe 2024; November 17, 2024. Barcelona, Spain. Previously presented at the ISPOR 2024.
Buck P, Sweeney C, Georgieva M, Kunzweiler C, Tossonian H, Boyle K, Chirila C, Crawford R, Wolowacz S, Pesch M. Family spillover impact of congenital CMV in the United States and Canada: study methodology. Poster presented at the European Congenital Cytomegalovirus Initiative (ECCI) 2024; October 9, 2024. Leiden, the Netherlands.
Gnanasakthy A, Crawford R, Qin S, Rockwood N, Doward L. Advanced patient-reported outcomes. Presented at the ISPOR 2024; May 5, 2024.
Frederiksen KS, Crawford R, Hahn-Pedersen J, Morrison R, Jeppesen R, Doward L, Weidner W. “Don't you recognize me...?”: insights from social media posts on the impact of alzheimer's disease on care partners. Poster presented at the AAIC 2023 Conference; July 16, 2023. Amsterdam, Netherlands.
Frederiksen KS, Crawford R, Hahn-Pedersen JH, Morrison R, Jeppesen R, Doward L, Weidner W. Insights from social media posts on the lived experience of alzheimer's disease. Poster presented at the ISPOR 2023 Conference; May 7, 2023. Boston, MA. [abstract] Value Health. 2023 Jun; 26(6 supplement):S352. doi: 10.1016/j.jval.2023.03.2395
Crawford R, Sikirica S, Morrison R, Cappelleri JC, Russell-Smith A, Shah R, Chadwick H, Doward L. The patient experience of acute lymphoblastic leukemia and its treatment: social media review. JMIR Cancer. 2023 May 1;9:e39852.. doi: 10.2196/39852
Gnanasakthy A, Crawford R, Qin S, Bender R, Doward L. Advanced patient-reported outcomes. Presented at the 2023 ISPOR Virtual Short Course Program; March 8, 2023.
Morrison R, Allas S, Crawford R, Tremel N, Weiss B, Robo C, Doward L. International adaptation and linguistic validation of the hypoparathyroidism daily diary of symptom experience (HPT-DD-SE) and the hypoparathyroidism life impact questionnaire (HPT-LIQ). Poster presented at the ISPOR Europe 2022; November 8, 2022. Vienna, Austria. [abstract] Value Health. 2022 Dec 1; 25(12):S418. doi: 10.1016/j.jval.2022.09.2079
Crawford R, Thompson A, Chang J, Morrison R, Doward L. Patient and caregiver insight into the impact of non-muscle-invasive bladder cancer and its treatments: a social media review. Poster presented at the ISPOR Europe 2022; November 7, 2022. Vienna, Austria. [abstract] Value Health. 2022 Dec 1; 25(12):S409. doi: 10.1016/j.jval.2022.09.2032
Cohen AD, Hari P, Htut M, Berdeja JG, Usmani SZ, Madduri D, Olyslager Y, Goldberg JD, Schecter JM, Jackson CC, Gries KS, Fastenau JM, Valluri S, Deraedt W, Akram M, Crawford R, Morrison R, Doward L, Morgan K, Seldam ST, Jakubowiak A, Jagannath S. Patient perceptions regarding ciltacabtagene autoleucel treatment: qualitative evidence from interviews with patients with relapsed/refractory multiple Myeloma in the CARTITUDE-1 study. Clin Lymphoma Myeloma Leuk. 2022 Nov 7;16:54. doi: /10.1016/j.clml.2022.10.001
Lyall M, Crawford R, Bell T, Mamolo C, Neuhof A, Levy C, Heyes A. Characterizing the patient journey in multiple myeloma: qualitative review. JMIR Cancer. 2022 Sep 22;8(3):E39068. doi: 10.2196/39068
Crawford R, Allas S, Tremel N, Weiss B, Robo C, Morrison R, Murphy D, Doward L. Development of the Hypoparathyroidism daily diary of symptom experience (HPT-DD-SE) and the Hypoparathyroidism life impact questionnaire (HPT-LIQ). Poster presented at the American Society for Bone and Mineral Research (ASBMR) Annual Meeting 2022; September 9, 2022. Austin, TX.
Marvel J, Goransson O, Clark M, Romano (DeMuro) C, Olayinka-Amao O, Whalley D, Crawford R, Brindicci C, Garg K, Kordy K, Everhard F, Patalano F, Roesler Z, Landles R, Naujoks C, Gutzwiller FS. Interactive tablet application for self-report of asthma symptoms and impacts in young children. Poster presented at the ERS International Congress 2022; September 6, 2022. Barcelona, Spain. [abstract] Eur Respir J. 2022 Sep 4; 60(Suppl 66):2127. doi: 10.1183/13993003.congress-2022.2127
Crawford R, Allas S, Tremel N, Weiss B, Robo C, Morrison R, Murphy D, Doward L. Living with an "invisible disease”: a qualitative study with patients with hypoparathyroidism. Poster presented at the Endocrine Society Annual Meeting (ENDO) 2022; June 11, 2022. Atlanta, GA.
Gnanasakthy A, Crawford R, Qin S, Bender R, Doward L. Advanced patient-reported outcomes. Presented at the 2022 ISPOR Virtual Short Course Program; June 8, 2022.
Clark M, Romano C, Olayinka-Amao O, Whalley D, Crawford R, Pathak P, Brindicci C, Garg K, Kordy K, Everhard F, Patalano F, Roesler Z, Sutton T, Goransson O, Landles R, Naujoks C, Marvel J, Keininger DL. Development and content validation of a self-completed, electronic Pediatric Asthma Symptom Diary. J Patient Rep Outcomes. 2022 Mar 20;6(1):25. doi: 10.1186/s41687-022-00432-3
Ervin C, Crawford R, Evans E, Feldman SR, Zeichner J, Zielinski M, Cappelleri JC, DiBonaventura M, Takiya L, Myers DE. Patient and caregiver preferences on treatment attributes for atopic dermatitis. J Dermatolog Trea. 2021 Oct 6;1-9. doi: 10.1080/09546634.2021.1940810
English M, Stoykova B, Slota C, Doward L, Siddiqui E, Crawford R, DiBenedetti D. Qualitative study: burden of menopause-associated vasomotor symptoms (VMS) and validation of PROMIS sleep disturbance and sleep-related impairment measures for assessment of VMS impact on sleep. J Patient Rep Outcomes. 2021 Apr 26;5(1):37. doi: 10.1186/s41687-021-00289-y
English M, Stoykova M, Slota C, Doward L, Siddiqui E, Crawford R, DiBenedetti D. Qualitative study of the burden of vasomotor symptoms associated with menopause and content validity of two PROMIS sleep measures in menopausal women. Presented at the 2021 IMS Conference (Conference cancelled); February 4, 2021. Previously presented at the NAMS 2020 Virtual Meeting.
Levy C, Bell T, Lyall M, Mamolo C, Neuhof A, Crawford R, Heyes A. The patient experience of multiple myeloma: symptoms and health-related quality of life. Poster presented at the EHA2021 Virtual Congress; June 9, 2021. [abstract] Hemasphere. 2021; 5(S2):789.
Crawford R, Bell T, Levy C, Mamolo C, Lyall M, Neuhof A, Heyes A. The impact of COVID-19 on patient disease experience: insights from social media posts contributed by patients with multiple myeloma. Poster presented at the EHA2021 Virtual Congress; June 9, 2021. [abstract] Hemasphere. 2021; 5(S2).
Lyall M, Heyes A, Bell T, Mamolo C, Neuhof A, Levy C, Crawford R. Multiple myeloma treatment decisions from the patient perspective. Poster presented at the EHA2021 Virtual Congress; June 9, 2021. [abstract] Hemasphere. 2021; 5(S2):788.
Ervin CM, Whalley D, von Huth Smith L, Crawford R, Dine J, Fehnel SE. Development of the impact of weight on daily activities questionnaire: a patient-reported outcome measure. Clin Obes. 2020 Dec;10(6):e12387. doi: 10.1111/cob.12387
Cohen AD, Hari P, Htut M, Berdeja JG, Madduri D, Usmani SZ, Allred AJ, Olyslager Y, Banerjee A, Goldberg JD, Schecter JM, Jackson CC, Gries KS, Fastenau J, Deraedt W, Carrasco MJ, Akram M, Hossain F, Crawford R, Morrison R, Doward L, Jakubowiak A, Jagannath S. Patient expectations and perceptions of treatment in cartitude-1: phase 1b/2 study of ciltacabtagene autoleucel in relapsed/refractory multiple myeloma. Poster presented at the 62nd Annual Virtual Meeting of the American Society of Hematology (ASH); December 2020. [abstract] Blood. 2020 Nov; 136(Suppl 1):13-6. doi: 10.1182/blood-2020-136383
English M, Stoykova B, Slota C, Doward L, Siddiqui E, Crawford R, DiBenedetti D. Qualitative study of the burden of vasomotor symptoms associated with menopause and content validity of two PROMIS sleep measures in menopausal women. Poster presented at the NAMS 2020 Virtual Meeting; September 30, 2020.
Crawford SR, Morrison R, Doward L. The rise of the social media machine - a review of patient-centered research utilizing social media research methods presented at ISPOR (2010 -2018). Poster presented at the ISPOR 2019 European Conference; November 4, 2019. Copenhagen, Denmark. [abstract] Value Health. 2019 Dec; 22(S3). doi: 10.1016/j.jval.2019.09.2281
Crawford R, Sully K, Conroy R, Johnson C, Doward L, Bell T, Welch V, Peloquin F, Gater A. Patient-centered insights on treatment decision making and living with acute myeloid leukemia and other hematologic cancers. Patient. 2019 Aug 28. doi: 10.1007/s40271-019-00384-9
Doward L, Svedsater H, Whalley D, Crawford R, Leather D, Lay-Flurrie J, Bosanquet N. A descriptive follow-up interview study assessing patient-centred outcomes: Salford Lung Study in Asthma (SLS Asthma). NPJ Prim Care Respir Med. 2019 Aug 15;29(1):31. doi: 10.1038/s41533-019-0142-x.
Gemzoe K, Crawford R, Caress A, Rushton R, Shah A, Collier S, Doward L, Vekaria R, Worsley S, Leather DA. Patient and healthcare professional (HCP; general practitioner [GP] and practice manager [PM]) insights to facilitate engagement in future effectiveness studies: learnings from the Salford Lung Studies (SLS). Poster presented at the 2019 American Thoracic Society (ATS) International Conference; May 22, 2019. Dallas, TX.
Whalley D, Svedsater H, Doward L, Crawford R, Leather D, Lay-Flurrie J, Bosanquet N. Follow-up interviews from The Salford Lung Study (COPD) and analyses per treatment and exacerbations. NPJ Prim Care Respir Med. 2019 May 9;29(1):20. doi: 10.1038/s41533-019-0123-0
Crawford R, Doward L, Conroy R, Saretsky T, Sinha A. Living with congenital cytomegalovirus: a conceptual model of impact for patients and caregivers. Poster presented at the 2019 Pediatric Academic Societies (PAS) Meeting; April 28, 2019. Baltimore, MD.
Crawford R, Bell T, Rushton R, Doward L. A critique of YouTube™ as a data source for the qualitative exploration of patient-reported information on acute myeloid leukemia. Poster presented at the 2018 ISPOR 21st Annual European Congress; November 13, 2018. Barcelona, Spain.
Doward L, Svedsater H, Whalley D, Crawford R, Leather D, Lay-Flurrie J, Bosanquet N. Salford Lung Study in chronic obstructive pulmonary disease (SLS COPD): follow-up interviews on patient-centred outcomes. NPJ Prim Care Respir Med. 2017 Dec 15;27(1):66. doi: 10.1038/s41533-017-0066-2
Svedsater H, Doward L, Whalley D, Crawford R, Leather D, Lay-Flurrie J, Bosanquet N. Salford Lung Study in Chronic Obstructive Pulmonary Disease (SLS COPD): follow-up interviews on patient-centered outcomes. Poster presented at the 2017 ISPOR 22nd Annual International Meeting; May 23, 2017. Boston, MA. [abstract] Value Health. 2017 May; 20(5):A205.
Whalley D, Hauber AB, Crawford SR, Posner J, Doward L, Levitan B, Hemels M, Valgardsson VS. Patients' priorities for treatment in moderate to severe COPD. Poster presented at the 2015 ISPOR 18th Annual European Congress; November 2015. Milan, Italy.
Whalley D, Hauber AB, Crawford SR, Posner J, Doward L, Levitan B, Hemels M, Valgardsson VS. Patients' priorities for treatment in severe asthma. Poster presented at the 2015 ISPOR 18th Annual European Congress; November 2015. Milan, Italy.
Crawford SR, Brown TM, Fehnel SE, Doward L, Nelson L, Chen A, Kim T, Roof E, Dykens EM. The international development of the modified hyperphagia questionnaire. Poster presented at the 2015 ISPOR 18th Annual European Congress; November 2015. Milan, Italy.
Luquiens A, Whalley D, Crawford SR, Laramée P, Doward L, Price M, Hawken N, Dorey J, Owens L, Llorca PM, Falissard B, Aubin HJ. Development of the Alcohol Quality of Life Scale (AQoLS): a new patient-reported outcome measure to assess health-related quality of life in alcohol use disorder. Qual Life Res. 2015 Jun;24(6):1471-81. doi: 10.1007/s11136-014-0865-7
Doward L, Højbjerre L, Hogue S, Fernandez M, Barrett A, Crawford R, Kragh N, Aagren M. Influence of patient-reported outcomes on regulatory, HTA, and market access decisions: obesity and diabetes case examples. Poster presented at the 2015 ISPOR 20th Annual International Meeting; May 2015. Philadelphia, PA. [abstract] Value Health. 2015; 18:A1-A333.
Whalley D, Luquiens A, Crawford SR, Laramée P, Doward LC, Price MA, Hawken N, Dorey J, Owens L, Llorca PM, Falissard B, Aubin HJ. The patient experience of alcohol use disorder. Poster presented at the 2014 ISPOR 17th Annual European Congress; November 2014. Amsterdam.
Whalley D, Crawford SR, Laramée P, Higuchi S, Hao W, Kim S-G, Luquiens A, Aubin HJ. Cultural adaptation of the alcohol quality of life scale for use in Japan, China, and Korea. Poster presented at the 2014 ISPOR 17th Annual European Congress; November 2014. Amsterdam, The Netherlands.