Content validity–establishing and reporting the evidence in newly developed patient‐reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1 – eliciting concepts for a new PRO instrument

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Items 501–600 of 1,000

1. “I Don’t Have to Think About Watching the Ground”: A Qualitative Study Exploring the Concept of Vigilance as an Important Outcome for Ankle Reconstruction
   Ellie B. Pinsker, Joanna E. M. Sale, Monique A. M. Gignac, Timothy R. Daniels, Dorcas Beaton · 2019 · Arthritis Care & Research
2. Development and preliminary validation of a patient-reported outcome measure for conversation partner schemes: the Conversation and Communication Questionnaire for People with Aphasia (CCQA)
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3. A qualitative study of persons with persistent postconcussion symptoms and clinicians with concussion expertise to inform the development of a concussion-specific questionnaire
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4. Outcomes in patients with chronic uveitis: which factors matter to patients? A qualitative study
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5. Improving quality of life in vasculitis patients
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6. Quality of life following a lower limb reconstructive procedure: a protocol for the development of a conceptual framework
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7. Results from Patient Interviews on Fatigue in Progressive Multiple Sclerosis and Evaluation of Fatigue Patient-Reported Outcome (PRO) Instruments
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8. A systematic review highlighting poor quality of evidence for content validity of quality of life instruments in female chronic pelvic pain
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9. A Qualitative Study to Develop and Evaluate the Content Validity of the Vitiligo Patient Priority Outcome (ViPPO) Measures
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10. Patient experience of spontaneous intracranial hypotension (SIH): qualitative interviews for concept elicitation
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11. Development of a conceptual model evaluating the humanistic and economic burden of Crohn’s disease: implications for patient-reported outcomes measurement and economic evaluation
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12. Exploring the relationships between perceptions of tutoring and tutoring behaviours: a focus on graduate students serving as peer tutors to college-level chemistry students
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13. Treatment Satisfaction in Systemic Lupus Erythematosus
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14. Quality of life in mucopolysaccharidoses: construction of a specific measure using the focus group technique
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15. Assessing Financial Toxicity in Patients With Cancer: Moving Away From a One-Size-Fits-All Approach
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16. Development and initial cognitive testing of the Digital Equity Screening Tool (DEST): Community participatory approach to assessing digital inequality
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17. Psychometric performance of the Primary Mitochondrial Myopathy Symptom Assessment (PMMSA) in a randomized, double-blind, placebo-controlled crossover study in subjects with mitochondrial disease
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18. The Transthyretin Amyloidosis – Quality of Life (ATTR-QOL) Questionnaire: Development of a Conceptual Model and Disease-Specific Patient-Reported Outcome Measure
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19. Development and validation of FinTox: A new screening tool to assess cancer‐related financial toxicity
    Hoda Badr, Jessie Han, Martha Pritchett Mims · 2024 · Cancer Medicine
20. Development of the Lee Symptom Scale–Skin Sclerosis for chronic GVHD–associated sclerosis
    Emily Baumrin, Joseph A. Pidala, Sandra A. Mitchell, Lynn Onstad, Stephanie Joi Lee · 2025 · Blood
21. Toward a Measure of Communicative Participation for Children with Developmental Speech Disorders
    Meghan Darling-White · 2017 · Seminars in Speech and Language
22. Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up
    Nanna Bjerg Eskildsen, Lone Ross, Caroline Bulsara, Susanne Malchau Dietz, Thora Grothe Thomsen, Mogens Grøenvold, Susanne S. Pedersen, Clara Helene Rübner Jørgensen, Anna Thit Johnsen · 2020 · Quality of Life Research
23. Content validity of the ASQoL for use in a non-radiographic axial spondyloarthritis population: a qualitative study
    Mark C. Hwang, Mona L. Martin, Kristina K Harris, Philip Geerdts, Jeffrey L. Stark, John D. Reveille · 2020 · Quality of Life Research
24. Reducing the physical, social, and emotional impact of episodic migraine: Results from erenumab STRIVE and ARISE phase III randomized trials
    Ariane K. Kawata, Mary Kate Ladd, Richard B. Lipton, Dawn C. Buse, Mark Eliot Bensink, Shweta Shah, Asha Hareendran, Sally Mannix, Daniel D. Mikol · 2022 · Headache The Journal of Head and Face Pain
25. Performance of the Cough and Sputum Assessment Questionnaire (CASA-Q) in COPD: Evidence from Clinical and Online Patient Interaction Studies
    Francesco Patalano, Carolina Hache, Abhijit Pethe, Harneet Kaur, Nancy Kline Leidy, Tasneem Arsiwala, Nuzhat Afroz, Florian S. Gutzwiller · 2022 · International Journal of COPD
26. Validation of an Adapted Version of the Veterans RAND 12-Item Health Survey for Older Adults Living in Long-Term Care Homes
    Rozanne Wilson, Lena Cuthbertson, Ayumi Sasaki, Lara B. Russell, Lewis E. Kazis, Richard G. Sawatzky · 2023 · The Gerontologist
27. Development of the chronic obstructive pulmonary disease morning symptom diary (COPD-MSD)
    Gary A. Globe, Brooke M. Currie, Nancy Kline Leidy, Paul Jones, David M. Mannino, Fernando J. Martínez, Paul A. Klekotka, Sean O’Quinn, Niklas Karlsson, Ingela E Wiklund · 2016 · Health and Quality of Life Outcomes
28. Untitled work
    Neustadt · 2017 · 10.1007/s00482-017-0234-x
29. Content validity and electronic PRO (ePRO) usability of the Lung Cancer Symptom Scale-Mesothelioma (LCSS-Meso) in mesothelioma patients
    Heather L. Gelhorn, Anne M. Skalicky, Zaneta Balantac, Sonya L. Eremenco, Tricia Cimms, Katarina Halling, Patricia J. Hollen, Richard J. Gralla, Martin Christopher Mahoney, Christopher Sexton · 2018 · Supportive Care in Cancer
30. Using the BODY-Q to Evaluate Appearance and Quality of Life Following Treatment of Skin Laxity of the Outer Thigh with Microfocused Ultrasound and Calcium Hydroxylapatite
    Jesse R. Smith, Michael P. Sheehan, Laurie A. Casas · 2019 · Aesthetic Surgery Journal
31. Sexual Morbidity Assessment in Gyne-Oncology Follow-Up: Development of the Sexual Well-Being After Cervical or Endometrial Cancer (SWELL-CE) Patient-Reported Outcome Measure
    Isabel Duncan White, Alan Tennant, Cath Taylor · 2020 · The Journal of Sexual Medicine
32. The Role of Patients in Alopecia Areata Endpoint Development: Understanding Physical Signs and Symptoms
    Kathleen W. Wyrwich, Helen Kitchen, Sarah L. Knight, Natalie V. J. Aldhouse, Jake Macey, Fabio P. Nunes, Yves Dutronc, Natasha Atanaskova Mesinkovska, Justin Ko, Brett King · 2020 · Journal of Investigative Dermatology Symposium Proceedings
33. Development of a symptom menu to facilitate Goal Attainment Scaling in adults with Down syndrome-associated Alzheimer’s disease: a qualitative study to identify meaningful symptoms
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34. Content validity and reliability of the danish version of health care students’ attitudes towards addressing sexual health: a psychometric study
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35. Development and content validation of a symptom assessment for eosinophilic gastritis and eosinophilic gastroenteritis in adults and adolescents
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36. Fabry Disease Patient-Reported Outcome (FD-PRO) demonstrates robust measurement properties for assessing symptom severity in Fabry disease
    Alaa Hamed, Pronabesh DasMahapatra, Nicole Lyn, Chad J. Gwaltney, Charlie Iaconangelo, Daniel Serrano, Vijay R. Modur, Juan Manuel Politei · 2021 · Molecular Genetics and Metabolism Reports
37. Initial Content Validation and Roadmap for a New Patient-Reported Outcome Measure of Pain Intensity
    Dale J. Langford, Jennifer S. Gewandter, Dagmar Amtmann, Bryce B. Reeve, Amy L. Corneli, Kevin McKenna, Teresa Swezey, Molly McFatrich, Mark P. Jensen, Dennis C. Turk et al. · 2022 · Journal of Pain
38. The SKIN-Q: An Innovative Patient-Reported Outcome Measure for Evaluating Minimally Invasive Skin Treatments for the Face and Body
    Anne F. Klassen, Andrea L. Pusic, Manraj Nirmal Kaur, Jasmine Mansouri, Elena Tsangaris, Steven H. Dayan, Jennifer A. Klok, Katie Armstrong, Katherine B. Santosa, Charlene S. Rae et al. · 2024 · Facial Plastic Surgery & Aesthetic Medicine
39. Development of the osteoporosis assessment questionnaire—physical function (OPAQ-PF): an osteoporosis-targeted, patient-reported outcomes (PRO) measure of physical function
    April N. Naegeli, Annabel Nixon, Russel Thomas Burge, Deborah T. Gold, Stuart L. Silverman · 2013 · Osteoporosis International
40. The Development of a Financial Toxicity Patient-Reported Outcome in Cancer
    Jonas A. de Souza, Bonnie J. Yap, Fay J. Hlubocky, Kristen Wroblewski, Mark J. Ratain, David F Cella, Christopher K. Daugherty · 2014
41. Initial psychometric validation of the questionnaire on pain caused by spasticity (QPS)
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42. Nosebleeds in hereditary hemorrhagic telangiectasia: Development of a patient‐completed daily eDiary
    Marci Clark, Pamela Berry, Susan A. Martin, Nimanee Harris, Dennis L. Sprecher, Scott E. Olitsky, Jeffrey B. Hoag · 2018 · Laryngoscope Investigative Otolaryngology
43. Comparison of the Moorehead‐Ardelt quality of life questionnaire and the BODY‐Q in Danish patients undergoing weight loss and body contouring surgery
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44. An explanatory sequential mixed-methods design to establish thresholds of within-individual meaningful change on a sleep disturbance numerical rating scale score in atopic dermatitis
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45. Psychometric evaluation of the Indolent Systemic Mastocytosis Symptom Assessment Form (ISM-SAF©) and determination of a threshold score for moderate symptoms
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46. Linguistic accuracy and authenticity of the content of the Russian version of the module of gastrointestinal symptoms of the PedsQL™ questionnaire for pediatric patients
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47. Evaluation of the measurement properties of online health information quality assessment tools: A systematic review
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48. Revealing the Patient Perspective: Evolution of Patient‐Reported Outcome Measures in Botulinum Toxin Studies in Aesthetic Medicine
    Steven H. Dayan, Alexander Z. Rivkin, Patricia Ogilvie, JEAN D. A. CARRUTHERS, Yan Wu, Elisabeth Lee, Vaishali D. Patel, Maria Musumeci · 2025 · Journal of Cosmetic Dermatology
49. Assessing Caregiver Burden in Kidney Failure: A Systematic Review of Measurement Properties of Instruments
    Ravi Shankar, Eunice Wei Xin Lee, Nan Luo, Priyanka Khatri, Leanne Ca Yin Leong, Amartya Mukhopadhyay, Horng‐Ruey Chua, Wei-Zhen Hong · 2025 · Kidney Medicine
50. Eliciting patient-important outcomes through group brainstorming: when is saturation reached?
    Marianna D. LaNoue, Alexzandra T. Gentsch, Amy Cunningham, Geoffrey D. Mills, Amanda M. B. Doty, Judd E. Hollander, Brendan G. Carr, Larry Loebell, Gail Weingarten, Kristin L. Rising · 2019 · Journal of Patient-Reported Outcomes
51. Including Young Children in the Development and Testing of Patient Reported Outcome (PRO) Instruments: A Scoping Review of Children’s Involvement and Qualitative Methods
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52. Clinical meaningfulness and psychometric robustness of the MG Symptoms PRO scales in clinical trials in adults with myasthenia gravis
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53. Assessment of treatment response in chronic constipation clinical trials
    Claire M. Ervin, Sheri E. Fehnel, Robyn T. Carson, Jeffrey J. Johnston, Steven J. Shiff, Kurtz CB, Allen Wayne Mangel, Mollie J. Baird · 2014 · Clinical and Experimental Gastroenterology
54. Low rates of patient-reported outcome claims for orphan drugs approved by the us food and drug administration
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55. Measuring quality of life and patient satisfaction in hand conditions
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56. Development of a symptom assessment in patients with myelofibrosis: qualitative study findings
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57. International phase 1 study protocol to develop a health state classification system for a preference-based measure for women with breast cancer: the BREAST-Q Utility module
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58. The atopic dermatitis itch scale: development of a new measure to assess pruritus in patients with atopic dermatitis
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59. Resident Exposure to Aesthetic Surgical and Nonsurgical Procedures During Canadian Residency Program Training
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60. Development and content validity of the Barth Syndrome Symptom Assessment (BTHS-SA) for adolescents and adults
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61. ‘As long as I have a restroom somewhere […], I am fine’: a qualitative study on the perspectives of peri- and postmenopausal women on the impact of the urinary component of the genitourinary syndrome of menopause (GSM)
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62. Measuring the patient experience of chronic rhinosinusitis with nasal polyposis: qualitative development of a novel symptom diary
    Sean O’Quinn, Vivian H. Shih, Ubaldo J. Martin, Oren I. Meyers, Patrick Crooks, Julie R. Bailey, Ashley F. Slagle · 2021 · International Forum of Allergy & Rhinology
63. LIMB-Q Kids—German Translation and Cultural Adaptation
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64. To rest or to compete? A 4-week cohort study of analgesic use and willingness to compete hurt in Danish youth elite athletes
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65. Unique Challenges in Development, Psychometric Evaluation, and Interpretation of Daily and Event Diaries as Endpoints in Clinical Trials
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66. Practical Considerations for the Use of Clinical Outcome Assessments (COAs) in Pediatric Clinical Research: Examples From Pediatric Gastroenterology
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67. Preference-based disease-specific health-related quality of life instrument for glaucoma: a mixed methods study protocol
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68. Development of a stated-preference instrument to prioritize treatment goals in recent onset schizophrenia
    Kathleen Marie Beusterien, Elcie Chan, Pedro Such, Anne de Jong-Laird, Stephan Heres, Kaitlan Amos, J.-Y. Loze, Anna-Greta Nylander, Paul Robinson, John F. P. Bridges · 2017 · Current Medical Research and Opinion
69. Development and construct validation of a parent-proxy quality of life instrument in children with bronchopulmonary dysplasia aged 4–8 years old
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70. Patient-Reported Outcomes in Oncology, Beyond Randomized Controlled Trials
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71. The Effect of “SELF-HELP Packages” on Post Stroke Depression among Ischemic Stroke Survivors
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72. Psychometric evaluation of the Advanced Systemic Mastocytosis Symptom Assessment Form (AdvSM-SAF)
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73. Applying Computerized Adaptive Testing to the FACE-Q Skin Cancer Module: Individualizing Patient-Reported Outcome Measures in Facial Surgery
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74. A questionnaire to assess eating behavior: Structure, validity and responsiveness of a new German eating behavior scale (SEV)
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75. Patient-Reported Outcomes in Routine Care—A True Innovation but Only If Used Correctly
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76. Key Insights into Developing Qualitative Concept Elicitation Work for Outcome Measures with Children and Young People
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77. Use of patient-reported global assessment measures in clinical trials of chronic pain treatments: ACTTION systematic review and considerations
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78. Evaluating Comprehensibility of 157 Patient-Reported Outcome Measures (PROMs) in the Nationwide Dutch Outcome-Based Healthcare Program: More Attention for Comprehensibility of PROMs is Needed
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79. Development of the coreHEM mental health patient‐reported outcome measure – A novel mental health outlook measure for people with haemophilia
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80. Young children (6–7 years) can meaningfully participate in cognitive interviews assessing comprehensibility in health-related quality of life domains: a qualitative study
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81. Can machine translation match human expertise? Quantifying the performance of large language models in the translation of patient-reported outcome measures (PROMs)
    Sheng-Chieh Lu, Cai Xu, Manraj Nirmal Kaur, Maria Orlando Edelen, Andrea L. Pusic, Chris J. Sidey-Gibbons · 2025 · Journal of Patient-Reported Outcomes
82. Understanding the quality-of-life impacts of ocular surface disease
    Pawan Baral, Sheela Evangeline Kumaran, Fiona Jane Stapleton, Jwu Jin Khong, Nicole Ann Carnt, James S. Wolffsohn, Konrad Pesudovs · 2025 · Contact Lens and Anterior Eye
83. Development and psychometric evaluation of the self-assessment of psoriasis symptoms (SAPS) – clinical trial and the SAPS – real world patient-reported outcomes
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84. Clinically important change on the Unified Dyskinesia Rating Scale among patients with Parkinson's disease experiencing dyskinesia
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85. Patient prioritisation of items to develop the Patient‐Reported Impact of Dermatological Diseases measure: A global Delphi study
    Nirohshah Trialonis‐Suthakharan, Rachael Pattinson, Nasim Tahmasebi Gandomkari, Jennifer Austin, Christine Janus, Nicholas Courtier, Rachael M. Hewitt, Christine Bundy, Matthias Augustin · 2024 · Journal of the European Academy of Dermatology and Venereology
86. The effect of positive mental well-being on patient reported outcome (PRO): finding from a cross-sectional multi-disease study in China
    Zhihao Yang, Nan Luo, Yanming Hong · 2024 · Health and Quality of Life Outcomes
87. Reliability and between-group stability of a health-related quality of life symptom index for persons with anal high-grade squamous intraepithelial lesions: an AIDS Malignancy Consortium Study (AMC-A03)
    the ANCHOR HRQoL Implementation Group, Thomas Michael Atkinson, Joel Michael Palefsky, Yuelin Li, Andrew Webb, J. Michael Berry, Stephen E. Goldstone, Rebecca A. Levine, Timothy J. Wilkin, Gary Bucher et al. · 2019 · Quality of Life Research
88. The Vulvodynia Experience Questionnaire: Qualitative Development of a New Patient-Reported Outcome Measure for Vulvodynia
    Andrew T. Goldstein, Pedro M. Quintana Diez, Sofia Kapanadze, Mary Lynn Cala, Christopher J. Evans, Julie L. Whyte, Annette Christoph · 2020 · The Journal of Sexual Medicine
89. Cross‐cultural adaptation and psychometric validation of the Patient Scar Assessment Questionnaire to the Spanish language in head and neck surgery
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90. Development of a conceptual model and patient-reported outcome measures for assessing symptoms and functioning in patients with heart failure
    Olga Moshkovich, Katy L. Benjamin, Katie Hall, Ryan Murphy, Robyn von Maltzahn, Boris Gorsh, Vanja Sikirica, Rajnish Saini, Dennis L. Sprecher · 2020 · Quality of Life Research
91. Establishing the content validity of the Prescription Opioid Misuse and Abuse Questionnaire (POMAQ) among chronic pain patients
    Karin S. Coyne, Alexandra I. Barsdorf, Anne B. Brooks, Jean-Yves Mazière, Renee F. Pierson, Stephen F. Butler, Sidney H. Schnoll · 2020 · Current Medical Research and Opinion
92. Development and content validation of the Satisfaction and Experience Questionnaire for Granulocyte Colony-Stimulating Factor (SEQ-G-CSF)
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93. Development of a patient-reported outcome measure for neck pain in military aircrew: qualitative interviews to inform design and content
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94. Validation of the Self-Reported Psoriasis Treatment Convenience Scale (PTCS)
    Steven R. Feldman, Morten Præstegaard, Arne Haahr Andreasen, Johan Selmer, Tove Holm‐Larsen · 2021 · Dermatology and Therapy
95. A non-interventional observational study to identify and validate clinical outcome assessments for adults with phenylketonuria for use in clinical trials
    Barbara K. Burton, Anne M. Skalicky, Christoph Baerwald, Deborah A. Bilder, Cary O. Harding, Aaron B. Ilan, Elaina R. Jurecki, Nicola Longo, David T. Madden, Sivri Hs et al. · 2021 · Molecular Genetics and Metabolism Reports
96. Qualitative Analysis of Pain in Patients With Locally Advanced or Metastatic Urothelial Carcinoma
    Susan A. Martin, Sonali N. Shah, Zsolt Hepp, Nimanee Harris, Alicia Katherine Morgans · 2021 · Bladder Cancer
97. A qualitative study to understand the experience of somatostatin analog treatments from the perspective of patients with neuroendocrine tumors
    Caroline Seo, Erica G. Horodniceanu, Rachel Shah, Grace Goldstein, David Ray, Bonita Bennett, Alexandria T. Phan, Kelly P. McCarrier · 2022 · Supportive Care in Cancer
98. The State of Patient-Reported Outcome Measures for Pediatric Patients with Inherited Retinal Disease
    Kavin Selvan, Maria Fernanda Abalem, Gabrielle D. Lacy, Ajoy Vincent, Elise Héon · 2022 · Ophthalmology and Therapy
99. Saving time and effort: Best practice for adapting existing patient-reported outcome measures in hepatology
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