Clinigma| Linda Abetz-Webb

Linda Abetz-Webb

Scientific Lead

Role

Degree

MA in Applied child development and a BA in English and Psychology.

Personal Info

About

Linda brings over three decades of experience planning and implementing patient, caregiver and clinician reported health outcomes research strategies in pharmaceutical and health care environments. She is known in the field as a rare disease and pediatric COA expert and continues to run her company, Patient-Centred Outcomes Assessments, Ltd., while providing us with her COA expertise. She enjoys brainstorming with clients on the best strategies for their products to maximize the likelihood of success.

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Expertise

Deep Clinical Trial Experience

Extensive experience supporting regulatory-focused evidence strategies aligned with FDA and EMA expectations
Specialist expertise in pediatrics and rare disease
Published author of peer-reviewed articles, plenary speaker at international scientific congresses

Therapeutic Areas

Rare Disease: Angelman syndrome, eosinophilic esophagitis, systemic lupus erythematosus, spinocerebellar ataxia, hereditary angioedema, infantile neuroaxonal dystrophy, KCNQ2, pediatric cholestasis, MPS, hunters syndrome
Pediatrics: Rare diseases, respiratory syncytial virus, ulcerative colitis, constipation, irritable bowel syndrome, Type 1 and Type 2 diabetes, restless legs syndrome, asthma, kidney disease, cystic fibrosis, ADHD
Immunology/infectious disease: Herpes zoster, respiratory syncytial virus, Non-tuberculous mycobacteria, influenza
Dermatology & Rheumatology: Atopic dermatitis, oily skin, acne, fibromyalgia, systemic sclerosis, scleroderma, myositis
Neurology/Mental Health: Parkinson's disease, Alzheimer’s disease, restless legs syndrome, epilepsy, KCNQ2, Depression, Schizophrenia, Down Syndrome
Respiratory: Asthma, COPD
Oncology & Hematology: Breast cancer, prostate cancer, iron overload, pediatric cancers, ovarian cancer
Women's Health & Urology: Menopause, contraceptive devices, sexual dysfunction
Gastrointestinal & Cardiovascular: Ulcerative colitis, constipation, irritable bowel disease, atrial fibrillation, pulmonary hypertension, stroke

Methodological Excellence

Specialist in qualitative interview design, concept elicitation, and cognitive debriefing methodologies
Conducted qualitative interviews with patients, caregivers, and healthcare professionals across diverse therapeutic areas for over 30 years
COA strategy design and validation for over 200 measures
Author of methodological publications in peer-reviewed journals, covering special considerations for pediatric COA development and qualitative research methods

Regulatory Success

Extensive experience supporting and participating in FDA and EMA regulatory interactions (n=15)
Successfully developed over 40 COA evidence packages and dossiers to support FDA and EMA submissions

Quality Assurance

Systematic approach to COA strategy and interview protocol development based on 30+ years of research
Rigorous data analysis methodology ensuring scientifically robust findings
Experience training and supervising international research teams

Publications

Rare Disease-Adults

Potashman MH, Rogula BM, Powell LC, Korol EE, Dickson SP, Hendrix S, Heinrich M, Rudell K, Abetz-Webb L, Beiner MW, Coric V, Rosenthal LS, Perlman SL, Schmahmann JD, L'Italien G. Incorporating Patient Perspectives into a Composite Score for Measuring Disease Progression in Spinocerebellar Ataxia (SCA). Neurol Ther. 2026 Apr;15(2):807-816. doi: 10.1007/s40120-026-00891-6. Epub 2026 Feb 18.

Mendivil J, Zhu L, Bonner N, Gargon E, Jouvin MH, Abetz-Webb L, Fairbanks H, Sims J, Middlehurst J, Cronin P, Chen M, Cohn DM, Lu P, Riedl MA. Assessing Patient-Reported Outcomes in Acute Attacks of Hereditary Angioedema: Insights from a Mixed Methods Study of Participants Receiving Standard-of-Care Treatments in a Real-World Setting. Clin Rev Allergy Immunol. 2026 Mar 2;69(1):14.

Potashman M, Heinrich M, Rudell K, Abetz-Webb L, Suminski N, Doma R, Jarodia K, Jain M, Buckley C, Wolfe-Beiner M, Coric V, Perlman S, Rosenthal L, Schmahmann J, L'Italien G. Content Validity of the Spinocerebellar Ataxia Composite Score as a Measure of Disease Progression in Patients with Spinocerebellar Ataxia. Cerebellum. 2025 Sep 1;24(5):146.

Potashman M, Rudell K, Suminski N, Doma R, Heinrich M, Abetz-Webb L, Beiner MW, Coric V, Rosenthal LS, Kuo SH, Zesiewicz T, Fife TD, van de Warrenburg B, Ristori G, Synofzik M, Subramony S, Perlman S, Schmahmann JD, L'Italien G. Content Validity of the Friedreich Ataxia Rating Scale in Patients with Spinocerebellar Ataxia. Neurol Ther. 2025 Apr;14(2):547-563.Epub 2025 Jan 15.

Potashman M, Rudell K, Pavisic I, Suminski N, Doma R, Heinrich M, Abetz-Webb L, Beiner MW, Kuo SH, Rosenthal LS, Zesiwicz T, Fife TD, van de Warrenburg BP, Ristori G, Synofzik M, Perlman S, Schmahmann JD, L'Italien G. Content Validity of the Modified Functional Scale for the Assessment and Rating of Ataxia (f-SARA) Instrument in Spinocerebellar Ataxia. Cerebellum. 2024 May 7.

Bonner N, Abetz-Webb L, Renault L, Caballero T, Longhurst H, Maurer M, Christiansen S, Zuraw B; Icatibant Outcome Survey (IOS) International Executive Committee and the Hereditary Angioedema Association (HAEA) Medical Advisory Board. Development and content validity testing of a patient reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies. Health Qual Life Outcomes. 2015 Jul 1;13:92.

Rofail D, Maguire L, Kissner M, Colligs A, Abetz-Webb L. Health-related quality of life is compromised in individuals with spina bifida: results from qualitative and quantitative studies. Eur J Obstet Gynecol Reprod Biol. 2014 Oct;181:214-22.

Rare Disease-Pediatrics

Girardi A, Abetz-Webb L, Rudell K, Atwal PS, Fay A. Psychometric properties of the Infantile Neuroaxonal Dystrophy Rating Scale. Dev Med Child Neurol. 2026 May;68(5):706-715. doi: 10.1111/dmcn.16506. Epub 2025 Sep 19.

Potashman MH, Rudell K, Abetz-Webb L, Suminski N, Gold A, Doma R, Jarodia K, Buckley C, Ridley M, Lerner J, Mather J, Coric V, Numis AL, Sands TT, Millichap J, Berg AT, L'Italien G. Understanding lived experiences with KCNQ2 developmental and epileptic encephalopathy. Epilepsy Behav. 2025 Nov;172:110670 Epub 2025 Sep 4.

Kamath BM, Abetz-Webb L, Kennedy C, Hepburn B, Gauthier M, Johnson N, Medendorp S, Dorenbaum A, Todorova L, Shneider BL. Development of a Novel Tool to Assess the Impact of Itching in Pediatric Cholestasis. Patient. 2018 Feb;11(1):69-82

Pediatrics

Tatlock S, Bentley S, Arbuckle R, Abetz-Webb L, Scott J. Content validation of a caregiver diary to monitor severity and recovery of pediatric patients with respiratory syncytial virus infection. J Patient Rep Outcomes. 2022 May 12;6(1):48

Humphrey L, Randall JA, Hunter T, Keith S, Symonds T, Abetz-Webb L, Kappelman M, Naegeli A. A qualitative study of the experience of aduts and adolescents with ulcerative colitis. Inflammatory Bowel Diseases, 2018 Feb; 24 (Supplement 1): S4.

Arbuckle RA, Carson RT, Abetz-Webb L, Hyams J, Di Lorenzo C, Lewis BE, Gargon E, Kurtz C, Shiff SJ, Johnston JM. Measuring the Symptoms of Pediatric Constipation and Irritable Bowel Syndrome with Constipation: Expert Commentary and Literature Review. Patient. 2014 Jun 26. [Epub ahead of print]

Varni JW, Curtis BH, Abetz LN, Lasch KE, Piault EC, Zeytoonjian AA. Content validity of the PedsQL™ 3.2 Diabetes Module in newly diagnosed patients with Type 1 diabetes mellitus ages 8-45. Qual Life Res. 2012 Dec 27.

Picchietti DL, Arbuckle RA, Abetz L, Durmer JS, Ivanenko A, Owens JA, Croenlein J, Allen RP, Walters AS. Pediatric restless legs syndrome: analysis of symptom descriptions and drawings. J Child Neurol. 2011 Nov;26(11):1365-76. doi: 10.1177/0883073811405852.

Arbuckle R, Abetz L, Durmer JS, Ivanenko A, Owens JA, Croenlein J, Bolton K, Moore A, Allen RP, Walters AS, Picchietti DL. Development of the Pediatric Restless Legs Syndrome Severity Scale (P-RLS-SS): a patient-reported outcome measure of pediatric RLS symptoms and impact. Sleep Med. 2010 Oct;11(9):897-906. doi: 10.1016/j.sleep.2010.03.016.

Cappelleri JC, Gerber RA, Quattrin T, Deutschmann R, Luo X, Arbuckle R, Abetz L. Development and validation of the WEll-being and Satisfaction of CAREgivers of Children with Diabetes Questionnaire (WE-CARE). Health Qual Life Outcomes. 2008 Jan 18;6:3. doi: 10.1186/1477-7525-6-3

Landgraf JM, Maunsell E, Speechley KN, Bullinger M, Campbell S, Abetz L, Ware JE. Canadian-French, German and UK versions of the Child Health Questionnaire: methodology and preliminary item scaling results. Qual Life Res. 1998 Jul;7(5):433-45.

Landgraf JM & Abetz L. (1997). The physical and psychosocial well-being of children with different medical conditions. Invited manuscript. Special issue, Psychology and Health, "Quality of Life: Recent Advances in Theory and Methods (McGee H and Jenkinson C (eds)).

Landgraf JM, Abetz L and Powers M. (1997) Comparison of maternal and paternal reports of children's health status and well-being: Early experiences with the CHQ-PF50. Quality of Life Assessment in Children, (Drotar, Ed). Lawrence Erlbaum Press.

Landgraf JM, Abetz LN, Ware JE Jr. (1997). The Child Health Questionnaire: A User's Manual. New England Medical Center Hospitals, Inc.

Kurtin PS, Landgraf JM, Abetz L. Patient-based health status measurements in pediatric dialysis: expanding the assessment of outcome. Am J Kidney Dis. 1994 Aug;24(2):376-82.

Wertlieb D, Abetz L. Children's recovery from unintentional injury: Associations of severity and psychosocial factors. Archives of Physical Medicine and Rehabilitation. 1992 Oct; 73(10): P1006.

Methods

Salzberger T, Cano S, Abetz-Webb L, Afolalu E, Chrea C, Weitkunat R, Rose J. Addressing traceability of self-reported dependence measurement through the use of crosswalks. Measurement. May 17, 2021: https://doi.org/10.1016/j.measurement.2021.

Chrea C, Acquadro C, Afolalu EF, Spies E, Salzberger T, Abetz-Webb L, Cano S, Arnould B, Mainy N, Rose J, Weitkunat R. Developing fit-for-purpose self-report instruments for assessing consumer responses to tobacco and nicotine products: the ABOUT™ Toolbox initiative. F1000Res. 2018 Dec 2;7:1878.

Brédart A, Marrel A, Abetz-Webb L, Lasch K, Acquadro C. Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients' experience. Health Qual Life Outcomes. 2014 Feb 5;12:15.

Arbuckle R, Abetz-Webb L. "Not just little adults": qualitative methods to support the development of pediatric patient-reported outcomes. Patient. 2013;6(3):143-59.

Abetz-Webb L. Listening to children’s and parents’ voices: using patient reported outcomes to empower patients with orphan diseases and their parents. Orphanet J Rare Dis. 2012 Nov 22;7(Suppl 2):A30.

Rofail D, Colligs A, Abetz L, Lindemann M, Maguire L. Factors contributing to the success of folic acid public health campaigns. J Public Health (Oxf). 2012 Mar;34(1):90-9. doi: 10.1093/pubmed/fdr048.

Lasch KE, Marquis P, Vigneux M, Abetz L, Arnould B, Bayliss M, Crawford B, Rosa K. PRO development: rigorous qualitative research as the crucial foundation. Qual Life Res. 2010 Oct;19(8):1087-96. doi: 10.1007/s11136-010-9677-6. Epub 2010 May 30.

McGrath C, Rofail D, Gargon E, Abetz L. Using qualitative methods to inform the trade-off between content validity and consistency in utility assessment: the example of type 2 diabetes and Alzheimer's disease. Health Qual Life Outcomes. 2010 Feb 12;8:23. doi: 10.1186/1477-7525-8-23.

Marquis P, Chassany O, Abetz L. A comprehensive strategy for the interpretation of quality-of-life data based on existing methods. Value Health. 2004 Jan-Feb;7(1):93-104. Review.

Evans C, Mertzanis P, Abetz L. Measurement strategies for indirect costs in economic evaluations. Expert Rev Pharmacoecon Outcomes Res. 2003 Dec;3(6):703-16.

Landgraf JM & Abetz L. (1996). "Measuring health outcomes in pediatric populations: Issues in psychometrics and application," In B. Spilker (ed) Quality of Life and Pharmacoeconomics in Clinical Trials, Raven Press.

Landgraf JM, Erling A, Wilkund I, Abetz L & Ware JE. The Child Health Questionnaire: Issues in Translation, Language, and Culture for Swedish Children and their Parents. Quality of Life Research: 1995 4(5); 452.

Other Therapeutic Areas

Cardiovascular Disease
‍Medin J, Arbuckle R, Abetz L, Halling K, Kulich K, Edvardsson N, Coyne KS. Development and Validation of the AFSymp™: An Atrial Fibrillation-Specific Measure of Patient-Reported Symptoms. Patient. 2014 Apr 15.

Ward AB, Chen C, Norrving B, Gillard P, Walker MF, Blackburn S, Holloway L, Brainin M, Philp I; Global Stroke Community Advisory Panel (GSCAP). Evaluation of the Post Stroke Checklist: a pilot study in the United Kingdom and Singapore. Int J Stroke. 2014 Oct;9 Suppl A100:76-84.

Bonner N, Abetz L, Meunier J, Sikirica M, Mathai SC. Development and validation of the living with pulmonary hypertension questionnaire in pulmonary arterial hypertension patients. Health Qual Life Outcomes. 2013 Oct 3;11(1):161.

Dermatology

Newton L, DeLozier AM, Griffiths PC, Hill JN, Hudgens S, Symonds T, Gable JC, Paik J, Wyrwich KW, Eichenfield LF, Abetz-Webb L, Silverberg JI. Exploring content and psychometric validity of newly developed assessment tools for itch and skin pain in atopic dermatitis. J Patient Rep Outcomes. 2019 Jul 16;3(1):42.

Arbuckle R, Atkinson MJ, Clark M, Abetz L, Lohs J, Kuhagen I, Harness J, Draelos Z, Thiboutot D, Blume-Peytavi U, Copley-Merriman K. Patient experiences with oily skin: the qualitative development of content for two new patient reported outcome questionnaires. Health Qual Life Outcomes. 2008 Oct 16;6:80. doi: 10.1186/1477-7525-6-80.

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Hematology

Rofail D, Viala M, Gater A, Abetz-Webb L, Baladi JF, Cappellini MD. An instrument assessing satisfaction with iron chelation therapy: Psychometric testing from an open-label clinical trial. Adv Ther. 2010 Aug;27(8):533-46.

Rofail D, Abetz L, Viala M, Gait C, Baladi JF, Payne K. Satisfaction and adherence in patients with iron overload receiving iron chelation therapy as assessed by a newly developed patient instrument. Value Health. 2009 Jan-Feb;12(1):109-17.

Vichinsky E, Pakbaz Z, Onyekwere O, Porter J, Swerdlow P, Coates T, Lane P, Files B, Mueller BU, Coïc L, Forni GL, Fischer R, Marks P, Rofail D, Abetz L, Baladi JF. Patient-reported outcomes of deferasirox (Exjade, ICL670) versus deferoxamine in sickle cell disease patients with transfusional hemosiderosis. Substudy of a randomized open-label phase II trial. Acta Haematol. 2008;119(3):133-41.

Cappellini MD, Bejaoui M, Agaoglu L, Porter J, Coates T, Jeng M, Lai ME, Mangiagli A, Strauss G, Girot R, Watman N, Ferster A, Loggetto S, Abish S, Cario H, Zoumbos N, Vichinsky E, Opitz H, Ressayre-Djaffer C, Abetz L, Rofail D, Baladi JF. Prospective evaluation of patient-reported outcomes during treatment with deferasirox or deferoxamine for iron overload in patients with beta-thalassemia. Clin Ther. 2007 May;29(5):909-17.

Abetz L, Baladi JF, Jones P, Rofail D. The impact of iron overload and its treatment on quality of life: results from a literature review. Health Qual Life Outcomes. 2006 Sep 28;4:73. Review.

Payne KA, Rofail D, Baladi JF, Viala M, Abetz L, Desrosiers MP, Lordan N, Ishak K, Proskorovsky I. Iron chelation therapy: clinical effectiveness, economic burden and quality of life in patients with iron overload. Adv Ther. 2008 Aug;25(8):725-42.

Infectious disease

Gater A, Abetz-Webb L, Carroll S, Mannan A, Serpell M, Johnson R. Burden of herpes zoster in the UK: findings from the zoster quality of life (ZQOL) study. BMC Infect Dis. 2014 Jul 20;14(1):402.

Carroll S, Gater A, Abetz-Webb L, Smith F, Demuth D, Mannan A. Challenges in quantifying the patient-reported burden of herpes zoster and post-herpetic neuralgia in the UK: learnings from the Zoster Quality of Life (ZQOL) study.BMC Res Notes. 2013 Nov 25;6:486.

Serpell M, Gater A, Carroll S, Abetz-Webb L, Mannan A, Johnson R. Burden of post-herpetic neuralgia in a sample of UK residents aged 50 years or older: findings from the zoster quality of life (ZQOL) study. Health Qual Life Outcomes. 2014 Jun 11;12(1):92.

Mental Health/Neurology

Florea I, Danchenko N, Brignone M, Loft H, Rive B, Abetz-Webb L. The Effect of Vortioxetine on Health-related Quality of Life in Patients With Major Depressive Disorder. Clin Ther. 2015 Oct 1;37(10):2309-2323.e6.

Gater A, Rofail D, Marshall C, Tolley C, Abetz-Webb L, Zarit SH, Berardo CG. Assessing the Impact of Caring for a Person with Schizophrenia: Development of the Schizophrenia Caregiver Questionnaire. Patient. 2015 Feb 14.

Gater A, Rofail D, Tolley C, Marshall C, Abetz-Webb L, Zarit SH, Berardo CG. "Sometimes It's Difficult to Have a Normal Life": Results from a Qualitative Study Exploring Caregiver Burden in Schizophrenia. Schizophr Res Treatment. 2014;. Epub 2014 Apr 3.

Abetz L, Rofail D, Mertzanis P, Heelis R, Rosa K, Tellefsen C, Roborel de Climens A, McBurney C, Thomas S. Alzheimer's disease treatment: assessing caregiver preferences for mode of treatment delivery. Adv Ther. 2009 Jun;26(6):627-44. doi: 10.1007/s12325-009-0034-5. Epub 2009 Jun 3. PubMed PMID: 19495575.

Abetz L, Arbuckle R, Allen RP, Garcia-Borreguero D, Hening W, Walters AS, Mavraki E, Kirsch JM. The reliability, validity and responsiveness of the International Restless Legs Syndrome Study Group rating scale and subscales in a clinical-trial setting. Sleep Med. 2006 Jun;7(4):340-9.

Abetz L, Arbuckle R, Allen RP, Mavraki E, Kirsch J. The reliability, validity and responsiveness of the Restless Legs Syndrome Quality of Life questionnaire (RLSQoL) in a trial population. Health Qual Life Outcomes. 2005 Dec 5;3:79.

Abetz L, Vallow SM, Kirsch J, Allen RP, Washburn T, Earley CJ. Validation of the Restless Legs Syndrome Quality of Life questionnaire. Value Health. 2005 Mar-Apr;8(2):157-67

Abetz L, Allen R, Follet A, Washburn T, Earley C, Kirsch J, Knight H. Evaluating the quality of life of patients with restless legs syndrome. Clin Ther. 2004 Jun;26(6):925-35..

Abetz L, Jacoby A, Baker GA, McNulty P. Patient-based assessments of quality of life in newly diagnosed epilepsy patients: validation of the NEWQOL. Epilepsia. 2000 Sep;41(9):1119-28.

Oncology

Gater A, Heron L, Abetz-Webb L, Coombs J, Simmons J, Guilhot F, Rea D. Adherence to oral tyrosine kinase inhibitor therapies in chronic myeloid leukemia. Leuk Res. 2012 Jul;36(7):817-25. doi: 10.1016/j.leukres.2012.01.021. Epub 2012 Feb 23.

Gater A, Abetz-Webb L, Battersby C, Parasuraman B, McIntosh S, Nathan F, Piault EC. Pain in castration-resistant prostate cancer with bone metastases: a qualitative study. Health Qual Life Outcomes. 2011 Oct 12;9:88.

Abetz L, Coombs JH, Keininger DL, Earle CC, Wade C, Bury-Maynard D, Copley-Merriman K, Hsu MA. Development of the cancer therapy satisfaction questionnaire: item generation and content validity testing. Value Health. 2005

Opthalmology

Abetz L, Rajagopalan K, Mertzanis P, Begley C, Barnes R, Chalmers R; Impact of Dry Eye on Everyday Life (IDEEL) Study Group. Development and validation of the impact of dry eye on everyday life (IDEEL) questionnaire, a patient-reported outcomes (PRO) measure for the assessment of the burden of dry eye on patients. Health Qual Life Outcomes. 2011 Dec 8;9:111.

Rajagopalan K, Abetz L, Mertzanis P, Espindle D, Begley C, Chalmers R, Caffery B, Snyder C, Nelson JD, Simpson T, Edrington T. Comparing the discriminative validity of two generic and one disease-specific health-related quality of life measures in a sample of patients with dry eye. Value Health. 2005 Mar-Apr;8(2):168-74.

Mertzanis P, Abetz L, Rajagopalan K, Espindle D, Chalmers R, Snyder C, Caffery B, Edrington T, Simpson T, Nelson JD, Begley C. The relative burden of dry eye in patients' lives: comparisons to a U.S. normative sample. Invest Ophthalmol Vis Sci. 2005 Jan;46(1):46-50.

Begley CG, Chalmers RL, Abetz L, Venkataraman K, Mertzanis P, Caffery BA, Snyder C, Edrington T, Nelson D, Simpson T. The relationship between habitual patient-reported symptoms and clinical signs among patients with dry eye of varying severity. Invest Ophthalmol Vis Sci. 2003 Nov;44(11):4753-61.

Respiratory Disease & Allergy

Tabberer M, Wells JR, Chandler D, Abetz-Webb L, Zhang S, Meeraus W, Fowler A, Slade D. Patient experience of moderate asthma attacks: qualitative research in the USA and Germany. J Patient Rep Outcomes. 2022 Nov 22;6(1):117.

Germain N, Gerth van Wijk R, Aballea S, Abetz-Webb L, Domdey A, Romano M and Toumi M. The Burden of Allergic Rhinitis and Impact of GRAZAX Grass Allergy Immunotherapy Treatment on Quality of Life in Germany and the Netherlands: Results from a Qualitative Study. International Journal of Allergy Medications. 2019 April; 5 :038.

Rudell K, Hareendran A, Bonner N, Arbuckle R, Burbridge C, Abetz L. Patients' experience of asthma control and clinical guidelines: perspectives from a qualitative study. Respir Med. 2012 Jun;106(6):909-11

Juniper EF, Bousquet J, Abetz L, Bateman ED; GOAL Committee. Identifying 'well-controlled' and 'not well-controlled' asthma using the Asthma Control Questionnaire. Respir Med. 2006 Apr;100(4):616-21.

Alexander M, Berger W, Buchholz P, Walt J, Burk C, Lee J, Arbuckle R, Abetz L. The reliability, validity, and preliminary responsiveness of the Eye Allergy Patient Impact Questionnaire (EAPIQ). Health Qual Life Outcomes. 2005 Oct 31;3:67.

Rheumatology/Endocrinology

Wratten S, Abetz-Webb L, Arenson E, Griffiths P, Bowman S, Hueber W, Ndife B, Kuessner D, Goswami P. Development and testing of an alternative responder definition for EULAR Sjögren's Syndrome Patient Reported Index (ESSPRI). RMD Open. 2023 Mar;9(1)

Arnold LM, Crofford LJ, Mease PJ, Burgess SM, Palmer SC, Abetz L, Martin SA. Patient perspectives on the impact of fibromyalgia. Patient Educ Couns. 2008 Oct;73(1):114-20. doi: 10.1016/j.pec.2008.06.005. Epub 2008 Jul 21.

Mease PJ, Arnold LM, Crofford LJ, Williams DA, Russell IJ, Humphrey L, Abetz L, Martin SA. Identifying the clinical domains of fibromyalgia: contributions from clinician and patient Delphi exercises. Arthritis Rheum. 2008 Jul 15;59(7):952-60.

Abetz, L., Sutton, M., Brady, L., McNulty, P. and Gagnon, D.D. (2002), The Diabetic Foot Ulcer Scale (DFS): a quality of life instrument for use in clinical trials. Pract Diab Int, 19: 167-175.

Tobacco impact

Law V, Afolalu EF, Abetz-Webb L, Wemyss LA, Turner A, Chrea C. International Expert Consensus on Relevant Health and Functioning Concepts to Assess in Users of Tobacco and Nicotine Products: Delphi Study. JMIR Form Res. 2025 Jan 2;9:e58614. doi: 10.2196/58614.

Afolalu EF, Salzberger T, Abetz-Webb L, Cano S, Weitkunat R, Rose JE, Chrea C. Development and initial validation of a new self-report measure to assess perceived dependence on tobacco and nicotine products. Sci Rep. 2024 May 2;14(1):10098.

Afolalu EF, Spies E, Bacso A, Clerc E, Abetz-Webb L, Gallot S, Chrea C. Impact of tobacco and/or nicotine products on health and functioning: a scoping review and findings from the preparatory phase of the development of a new self-report measure. Harm Reduct J. 2021 Jul 30;18(1):79.

Women’s Health

Stute P, Bińkowska M, Briggs P, Palacios S, Abetz-Webb L, Law V, Zablotna-Pociupany R, Boolell M. Development, content validation and feasibility of a decision aid tool for the treatment of women with menopausal symptoms. Maturitas. 2025 Mar;194:108195.

Novák A, de la Loge C, Abetz L. Development and validation of an acceptability and satisfaction questionnaire for a contraceptive vaginal ring, NuvaRing. Pharmacoeconomics. 2004;22(4):245-56.

Novák A, de la Loge C, Abetz L, van der Meulen EA. The combined contraceptivevaginal ring, NuvaRing: an international study of user acceptability. Contraception. 2003 Mar;67(3):187-94.