Special interest

Orphan drugs and rare diseases

Cognitive debriefing of the Barth Syndrome – Symptom Assessment (BTHS-SA)
Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C.
Poster presented at the 9th International Scientific, Medical, & Family Conference Meeting of the Barth Syndrome Foundation, Clearwater, FL, USA, July 16-21 2018

Exploring the sign and symptom experience of Barth syndrome in adult and adolescent populations
Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C.
Poster presented at the 9th International Scientific, Medical, & Family Conference Meeting of the Barth Syndrome Foundation, Clearwater, FL, USA, July 16-21 2018

Understanding the life experience of Barth syndrome from the perspective of older individuals
Stokes J, Mazar I, Ollis S. Love E, Espensen A, Shields AL.
Poster presented at the 9th International Scientific, Medical, & Family Conference Meeting of the Barth Syndrome Foundation, Clearwater, FL, USA, July 16-21 2018

Psychometric evaluation of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormone
Turner-Bowker DM, Yaworsky A, Palladino A, Pleil A, Shields A, Kelly M, Lamoureux RE, Love E, Morrissey L, Loftus J.
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research 23rd International Meeting, Baltimore MD, USA 19-23 May 2018

Development and preliminary evidence of the psychometric properties of the GNE myopathy functional activity scale
Mayhew J, Bonner N, Arbuckle R, Turnbull A, Bowden A, Skrinar A.
Journal of Comparative Effectiveness Research. 2018; 7(4):381-395

Understanding the functional impact of movement disorders in glucose transporter type 1 seficiency syndrome (Glut1 DS)
Bowden A, Collins P, Blair S. Wedsock K, Haller M, Brandabur M, Hall R, Kilgariff S, Arbuckle R, Mayhew J, Skrinar A.
13th International Congress of Inborn Errors. Rio de Janiero, Brazil, 5-8 September, 2017

The functional impact of movement disorders symptoms in glucose transporter type 1 deficiency syndrome (Glut1 DS)
Bowden A, Kilgariff S, Hall R, Brandabur M, Collins P.
Poster presented at: 5th International Symposium on Paediatric Movement Disorders, Barcelon, Spain, 2-3rd February

Characterization of patients with galactosialidosis and sialidosis type 1
Cimms T, Ali Q A, Kilgariff S, Johnson C, Arbuckle R, Malkus B, Schatz A, Haller C.
Poster presentation at the 13th International Congress of Inborn Errors, 5-8 September 2017

Development of a paroxysmal movement disorder diary for patients with glucose transporter type 1 deficiency syndrome (Glut1 DS)
Hall R, Kilgariff S, Collins P, Brandabur M, Arbuckle R, Bowden A.
21st International Congress of Parkinson’s Disease & Movement Disorder, June 4-8, 2017 in Vancouver, BC

Psychometric validation of a patient-reported outcome questionnaire in patients with pancreatic exocrine insufficiency
Johnson C, Williamson N, Janssen-van Solingen G, Arbuckle R, Johnson C, Simpson S, Staab D, Dominguez-Munoz E, Levy P, Connett G, Lerch M.
Poster presented at the 49th Meeting of the European Pancreatic Club (EPC), 28 June 2017

Qualitative assessment of the symptoms and impact of pancreatic exocrine insufficiency (PEI) to inform the development of a patient-reported outcome (PRO) instrument
Johnson C D, Arbuckle R, Bonner N, Connett G, Dominguez-Munoz E, Levy P, Staab D, Williamson N, Lerch M M.
Patient. 2017; 10(5): 615–628

Saturation of sign and symptom concepts in concept elicitation studies with rare disease and vulnerable patient populations
Mazar I, Stokes J, Shields AL.
Poster presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Initiatives that impact pricing and reimbursement of orphan (and ultra orphan) drugs: Review of European trends
Rousseau B, Poinas AC, Oliver L, Collings H.
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 20th Annual European Congress, Glasgow, Scotland, 4-8 November 2017

Cognitive debriefing of the Primary Mitochondrial Myopathy – Symptom Assessment (PMM-SA)
Stokes J, Covino J, Aiudi A, Mazar I, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C.
Oral presentation at the 19th Annual Conference of the United Mitochondrial Disease Foundation (June 28 – July 1 2017); Alexandria, VA USA

Exploring the sign and symptom experience of Barth syndrome in adult and adolescent populations
Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C.
22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Exploring and documenting the signs, symptoms, and impacts of primary mitochondrial disease
Stokes J, Covino J, Aiudi A, Mazar I, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C.
Poster presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Cognitive debriefing of the Advanced Systemic Mastocytosis Symptom Assessment Form (advSM-SAF)
Taylor F, Kreil S, Reiter A, Horny HP, Evans E, Mazar I, McNamara P, Boral A, Lamoureux RE, Shields A, Gotlib J.
Poster session presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Qualitative research to explore the patient experience of X-Linked Hypophosphataemia (XLH) and to evaluate the content validity of the BPI-SF and WOMAC® for use as clinical trial endpoints
Theodore-Oklota C, Arbuckle R, Bonner N, Spencer H.
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 22nd Annual International Meeting, Boston, MA USA, 20-24 May 2017

Qualitative research to explore the pediatric patient experience of X-Linked Hypophosphataemia (XLH) and to evaluate the content validity of PROMIS® item banks, FPS-R® and POSNA-PODCI for use as clinical trial endpoints
Theodore-Oklota C, Arbuckle R, Marshall C, Spencer H.
10th International Meeting of Pediatric Endocrinology, Washington DC, USA, 14-17 September, 2017

Psychometric evaluation of the Brief Pain Inventory – Short Form (BPI-SF) and Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC®) for use in X-Linked Hypophosphataemia (XLH), a rare genetic disorder
Theodore-Oklota C, Brohan E, Marshall C, Tritton T.
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 22nd Annual International Meeting, Boston, MA USA, 20-24 May 2017

Techniques for the psychometric evaluation of clinical outcome assessment (COA) measures used in rare disease
Turner-Bowker DM, Sen R, Morrissey L, Kelly M, Severson K, Litcher-Kelly L.
24th Annual Conference of the International Society for Quality of Life Research (ISOQOL). Philadelphia, PA 2017

Content validity of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormone
Turner-Bowker DM, Shields A, Yaworsky A, Lamoureux R, Morrissey L, Kelly M, Love E, Pleil A, Hart G, Hershkovitz O, Loftus J.
Poster session presented at the ISPOR 22nd Annual International Meeting, Boston, MA USA, 20-24 May 2017

Qualitative research to explore the patient experience of X-Linked Hypophosphatemia and evaluate the suitability of the BPI-SF and WOMAC® as clinical trial endpoints
Theodore-Oklota C, Bonner N, Spencer H, Arbuckle R, Chen C-Y, Skrinar A.
Value in Health (accepted for publication)

Challenges and solutions associated with patient-centered outcomes in rare diseases
Bonner N, Panter C, Spencer H, Braid J, Bennett B.
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

Development and content validity of the advanced systemic mastocytosis symptom assessment form (ADVSM-SAF)
Mazar I, Evans E, Taylor F, Patki A, Ojo O, Lamoureux RE, Horny H, Reiter A, Gotlib J, Shields A.
Poster presented at International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Vienna, Austria, 29th Oct-2nd Nov 2016

Responder analyses of droxidopa in patients with symptomatic neurogenic orthostatic hypotension
Rowse GJ, Hewitt A, Shields AL, Freeman R, Kaufmann H.
Poster presented at the 68th annual meeting of The American Academy of Neurology Annual Meeting in Vancouver, Canada

Towards a composite clinical endpoint: Identifying a core set of patient and caregiver relevant outcome measures through qualitative research on the global impact of Dravet syndrome
Nabbout R, Auvin S, Chiron C, Irwin J, Mistry A, Williamson N.
Poster presented at: European Congress on Epileptology, Prague 2016

Responder analyses of droxidopa in patients with symptomatic neurogenic orthostatic hypotension
Rowse GJ, Hewitt A, Shields AL, Freeman R, Kaufmann H.
Movement Disorders. 30(10):e7, SEP 2015

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

Development of a patient-reported outcome measure in pancreatic exocrine insufficiency (PEI)
Johnson C, Arbuckle R, Nonner N, Connet G, Dominguez-Munoz E, Haeusler J, Levy P, Platon J, Schifflers M, Staab D, Williamson N, Lerch M.
Poster presented at: European Pancreatic Club, Spain, June 2015

Development of evidence packages for regulatory and reimbursement submissions in rare diseases: real-world examples
Bonner N, Bowden A, Bal V, Kilburg A.
Workshop presented at: 18th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Milan, Italy, 7-11 November 2015

Development of patient-centered outcomes in rare diseases
Bonner N, MacCulloch A, Bennett B.
Poster session presented at: World Orphan Drug Congress, Geneva, Switzerland, 11-13 November 2015

Qualitative research to better understand the experience of Pancreatic Exocrine Insufficiency (PEI) symptoms from the patient perspective
Bonner N, Tolley C, Williamson N, Arbuckle R, Platon J, Haeusler J, Schifflers M.
Poster presented at European Pancreatic Club, Southampton, June 2014

The effect of ruxolitinib therapy on myelofibrosis-related symptoms and other patient-reported outcomes in COMFORT-I: a randomized, double-blind, placebo-controlled trial
Mesa RA, Gotlib J, Gupta V, Catalano JV, Deininger MW, Shields AL, Miller CB, Silver RT, Talpaz M, Winton EF, Harvey JH, Hare T, Erickson-Viitanen S, Sun S, Sandor V, Levy RS, Kantarjian MN, and Verstovsek S on behalf of all COMFORT-I Investigators.
Journal of Clinical Oncology, 31(10), 1285-1292. 2013

Use of the functional assessment of cancer therapy-anemia (FACT-AN) instrument in persons with MPN-associated myelofibrosis and anemia
Hudgens S, Gale RP, Tencer T, Khan Z.
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th International Meeting, New Orleans, USA, 20-22 May 2013

The progressive burden of myelofibrosis in untreated patients: an assessment of patient-reported outcomes in patients randomized to placebo in the COMFORT-I study
Mesa RA, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Sarlis NJ, Sandor V, Levy RS, Verstovsek S.
Leukemia Research, 37(8), 911-916. 2013

Development and validation of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies
Bonner N, Abetz L, Renault L, Caballero T.
Value Health 2012;15:A558

Development and validation of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies
Bonner N, Abetz L, Renault L, Caballero T.
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Gaining reimbursement of orphan products in Europe: Challenges due to wide variations in evidence requirements and processes
Heron L, Laurenson S, Costello J, Anderl C, Knospe J.
Value Health 2012;15:A308

Gaining reimbursement of orphan products in Europe: challenges due to wide variations in evidence requirements and processes
Heron L, Laurenson S, Costello J, Anderl C, Knospe J.
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Listening to children’s and parents’ voices: using patient-reported outcomes to empower patients with orphan diseases and their parents
Abetz-Webb A, Arbuckle R.
Workshop presented at: 6th European Conference on Rare Diseases & Orphan Products, Brussels, Berlin, 23–25 May 2012

Progressive worsening of patient-reported outcomes in untreated patients with myelofibrosis
Mesa R, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Verstovsek S.
Poster presented at the 17th annual international meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Washington DC, USA, 2012

The progressive burden of myelofibrosis (MF) in untreated patients: An assessment of patient reported outcomes in placebo-treated patients from COMFORT-1
Mesa R, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Verstovsek S.
Poster presented at the 17th Congress of the European Hematology Association (EHA). Amsterdam, Netherlands, 2012

Use of the Functional Assessment of Cancer Therapy-Anemia (FACT-AN) instrument in persons with MPN-associated myelofibrosis and anemia
Hudgens S, Gale RP, Tencer T, Khan Z.
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research, 17th Annual International Meeting, Washington, USA, 2-6 June 2012

Associations between improvements in Myelofibrosis (MF) symptoms and quality of life measures with splenomegaly reduction in COMFORT-I: A randomized, double-blind, phase III trial of the JAK1 and JAK2 inhibitor ruxolitinib versus placebo in patients with MF
Mesa RA, Gotlib J, Gupta V, DiPersio J, Catalano J, Deininger M, Shields AL, Miller C, Silver R, Talpaz M, Winton E, Harvey J, Hare T, Erickson-Viitanen S, Sun W, Sandor V, Levy R, Kantarjian H, and Verstovsek S on behalf of all COMFORT-I Investigators.
Poster presented at the 53rd annual meeting of the American Society of Hematology. San Diego, CA, USA, 10-13 December 2011

Results using the modified Myelofibrosis Symptom Assessment Form (MFSAF v2.0) in COMFORT I: a randomized, double-blind phase III trial of JAK1/2 inhibitor ruxolitinib vs. placebo for patients with myelofibrosis (MF)
Mesa RA, Kantarjian H, Shields AL, Gotlib JR, Gupta V et al. on behalf of all COMFORT-1 investigators.
Poster presented at the 16th Congress of the European Hematology Association. London, England, 9-12 June 2011

Paediatrics

Clinician (ClinRO) and caregiver (ObsRO) reported severity assessments for respiratory syncytial virus (RSV) in infants and young children: Development and qualitative content validation of Pediatric RSV Severity and Outcome Rating Scales (PRESORS)
Scott J, Tatlock S, Kilgariff S, Arbuckle R, Abetz-Webb L, Rusch S, Steven M.
Poster Presentation at the ISOQOL 25th Annual Conference in Dublin, Ireland, 24-27 October 2018

Psychometric evaluation of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormone
Turner-Bowker DM, Yaworsky A, Palladino A, Pleil A, Shields A, Kelly M, Lamoureux RE, Love E, Morrissey L, Loftus J.
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research 23rd International Meeting, Baltimore MD, USA 19-23 May 2018

Qualitative research to explore the pediatric patient experience of X-Linked Hypophosphataemia (XLH) and to evaluate the content validity of PROMIS® item banks, FPS-R® and POSNA-PODCI for use as clinical trial endpoints
Theodore-Oklota C, Arbuckle R, Marshall C, Spencer H.
10th International Meeting of Pediatric Endocrinology, Washington DC, USA, 14-17 September, 2017

Content validity of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormone
Turner-Bowker DM, Shields A, Yaworsky A, Lamoureux R, Morrissey L, Kelly M, Love E, Pleil A, Hart G, Hershkovitz O, Loftus J.
Poster session presented at the ISPOR 22nd Annual International Meeting, Boston, MA USA, 20-24 May 2017

Techniques for tailoring an interview guide for pediatric concept elicitation and cognitive debriefing interviews
Krohe M, Morrissey L, Turner-Bowker, DM.
Poster presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Cognitive testing of an electronic version of the Faces Pain Scale-Revised with pediatric and adolescent sickle cell patients
Gupta N, Naegeli AN, Turner-Bowker DM, Flood EM, Heath LE, Mays SM, Dampier C.
Patient. 2016 Mar 30. [Epub ahead of print]

Exploring and leveraging known resources to support pediatric clinical outcomes assessment (COA) development
Turner-Bowker D, Krohe M, Banderas CA.
Workshop presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

Exploring the qualitative experience of chest congestion with children and adults to develop patient-reported outcome items to self-assess symptoms of the common cold
Grant L, Marshall C, Burrows K, Khammo N, Albrecht H, Arbuckle R, Shea T.
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

Practical considerations for the use of clinical outcome assessments (COAs) in pediatric clinical research: Examples from pediatric gastroenterology
Kovacs S, Turner-Bowker DM, Calarco G, Mulberg A, Paty J.
Therapeutic Innovation & Regulatory Science 2016, Vol. 50(1) 37-43

The things kids say:  Clinical outcome assessments in pediatric clinical trials
Jackson C, Treem W, Turner-Bowker DM, Calarco G, Paty J, Mulberg A.
Forum presentation at the DIA 2016 52nd Annual Meeting, Philadelphia, PA, June 26-30 2016

What represents a meaningful improvement in symptom-free days (SFD) and rescue-free days (RFD) for children? Perspectives from children and caregivers (Paediatric Asthma: Evaluation and Treatment)
Nelsen LM, Staunton H, Sully K, Khindri S, Svedsater H, Arbuckle R.
Poster session presented at: ATS International Conference, San Francisco, USA, 13-18 May 2016

Developing a pediatric COA measurement strategy; a case study in asthma
Arbuckle R.
Oral presentation presented at: 5th Annual Critical Path Institute Patient-Reported Outcome (PRO) Consortium Workshop, Silver Spring, USA, April 29-30, 2014

Measuring the symptoms of pediatric constipation and irritable bowel syndrome with constipation: expert commentary and literature review
Arbuckle R, Carson R, Abetz-Webb L, Hyams J, Di Lorenzo C, Lewis B, Gargon E et al.
Patient (2014) 7:343-364

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

A parent-administered but child-completed Patient-Reported Outcome (PRO) provides a measure with content validity that is valid and reliable for use in children aged 6 to 11 years
Arbuckle R, Marshall C.
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research, 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Agreement between child and parent symptom diary responses in Chronic Constipation (CC) and Irritable Bowel Syndrome with Constipation (IBS-C): implications for the measurement of symptoms in young children
Holloway L, Arbuckle R, Carson RT, Dennee-Sommers B, Abetz-Webb L.
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research, 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

The use of creative exercises to maximise content drawn from concept elicitation interviews used to develop symptom and health-related quality of life measures in pediatric populations with chronic disease
Arbuckle R, Abetz-Webb L.
Oral presentation presented at: 20th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Miami, USA, October 9-12, 2013

The value of pilot testing PRO symptom diaries prior to conducting cognitive debriefing interviews in children/ adolescents: qualitative and quantitative insight
Arbuckle R, Holloway L, Carson RT, Dennee-Sommers B, Abetz-Webb L.
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research, 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Listening to children’s and parents’ voices: using patient-reported outcomes to empower patients with orphan diseases and their parents
Abetz-Webb A, Arbuckle R.
Workshop presented at: 6th European Conference on Rare Diseases & Orphan Products, Brussels, Berlin, 23–25 May 2012

Nutrition education and counselling provided during pregnancy: effects on maternal, neonatal and child health outcomes
Girard AW, Olude O.
Paediatr Perinat Epidemiol 2012;26:191-204

Pediatric patient-report outcomes and pediatric clinical trial design: challenges and solutions
Arbuckle R, Tassinari MS, Carson RT, Baird M.
Workshop presented at the International Society for Pharmacoeconomics and Outcomes Research, 17th Annual International Meeting, Washington, USA, 2–6 June 2012

Reliability and Validity of the Japanese Version of the Children’s Depression Rating Scale-Revised (CDRS-R). [in Japanese]
Denda K, Fujii Y, Nakato Y, Kako Y, Tanaka T, Crawford B.
Saishin Seishin Igaku (Newest Psychiatric Medicine) 2012; 17 (1): 51-58

Selection and development of Clinical Outcome Assessments (COAs) for use in pediatric clinical trials
Tassinari MS, Wang P, Abetz L, Patrick D, Rofail, D, Lee J, Papadopoulos E.
Oral presentation at Third Annual Patient-Reported Outcome Consortium workshop, Silver Spring, USA, 4 April 2012

The effects of household food production strategies on the health and nutrition outcomes of women and young children: a systematic review
Girard AW, Self JL, McAuliffe C, Olude O.
Paediatr Perinat Epidemiol 2012;26:205-22

The impact of Chronic Constipation (CC) on children and adolescents: results from qualitative research (FR)
Arbuckle R, Abetz L, Carson R T, Baird M J, Shiff S J, Johnson J M, Bonner N.
Qual Life Res 2012;20:59

The impact of Irritable Bowel Syndrome with Constipation (IBS-C) on children and adolescents: results from qualitative research (FR)
Bonner N, Arbuckle R, Abetz L, Carson R T, Baird M J, Shiff S J, Johnson J M.
Qual Life Res 2012;20:97

Communication, listening, cognitive and speech perception skills in children with Auditory Processing Disorder (APD) or Specific Language Impairment (SLI)
Ferguson MA, Hall RL, Riley A, Moore DR.
J Speech Lang Hear Res 2011;54:211-27

Paediatrics: an unexplored and rewarding population – the right methods make it easier
Abetz L.
Pharmaphorum 28 July 2011

Pediatric restless legs syndrome: analysis of symptom descriptions and drawings
Picchietti D L, Arbuckle R, Abetz L, Durmer J S, Ivanenko A, Owens J A, Croenlein J, Allen R P, Walters AS.
J Child Neurol 2011; 26:1365-76

Testing of a conceptual model of asthma in adolescents
Bright N, Maguire L, Arbuckle R, Tabberer M, Dale P.
Value Health 2011; 14:A497

Testing of a conceptual model of asthma in adolescents
Bright N, Maguire L, Arbuckle R, Tabberer M, Dale P.
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

Training speech-in-noise perception in mainstream school children
Millward KE, Hall RL, Ferguson MA, Moore DR.
Int J Pediatr Otorhinolaryngol 2011; 75:1408

An introduction to pediatric patient-reported outcomes and pediatric clinical trial design
Arbuckle R, Abetz-Webb L, Carson R, Edelman Lewis B, Chassany O.
Workshop presented at the International Society for Quality of Life Research 17th Annual Conference, London, UK, 27–30 October 2010

Child and parent reports of symptoms of Irritable Bowel Syndrome with Constipation (IBS-C): results of qualitative interviews
Arbuckle R, Lewis BE, Carson R, Abetz L, Johnston J M.
Value Health 2010;13:A373

Child and parent reports of symptoms of irritable bowel syndrome with constipation (IBS-C): results of qualitative interviews
Arbuckle R, Lewis BE, Carson R, Abetz L, Johnston JM.
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

Cost-utility analysis of refinamide versus topiramate and lamotrine for the treatment of children with Lennox-Gastaut Syndrome in the United Kingdom
Verdian L, Yi Y.
Seizure 2010; 19(1):1-11

Development of a pediatric chronic constipation symptom measure: results of qualitative interviews with children and their parents
Abetz L, Arbuckle R, Carson R, Lewis B, Hunter L J, Shiff S J, Johnston J.
Qual Life Res 2010;19:141

Development of pediatric irritable bowel syndrome with constipation measures: results of qualitative interviews with children and their primary caregivers
Lewis B E, Arbuckle R, Abetz L, Carson R, Pompilus F, Johnston J, Shiff S.
Poster session presented at: North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Annual meeting, New Orleans, USA, 21-23 October 2010

Development of the Pediatric Restless Legs Syndrome Severity Scale (P-RLS-SS): A patient-reported outcome measure of pediatric RLS symptoms and impact
Arbuckle R, Abetz LA, Picchietti DL, Durmer JS, Ivanenko A, Owens JA, Croenlein J, Bolton K, Moore A, Allen RP, Walters AS.
Oral presentation at: 33rd Sleep Conference, San Antonio, USA, June, 2010: A314

Development of the Pediatric Restless Legs Syndrome Severity Scale (P-RLS-SS): A patient-reported outcome measure of pediatric RLS symptoms and impact
Arbuckle R, Abetz L, Durmer J, Ivaneko A, Owens J, Croenlein J, Bolton K, Moore A, Allen RP, Walters A, Picchietti D.
Sleep Medicine 2010;11:897-906

Pediatric restless legs syndrome: qualitative analysis of symptom descriptions and drawings
Picchietti DL, Arbuckle R, Abetz LA, Durmer JS, Ivanenko A, Owens JA, Croenlein J, Allen RP, Walters AS.
Poster session presented at: 33rd Sleep Conference, San Antonio, USA, June, 2010: A341

Symptoms of pediatric chronic constipation: results of qualitative interviews with children and their primary caregivers
Carson RT, Abetz LN, Arbuckle R A, Lewis B, Bonner N, Shiff S, Johnston J.
Poster presented at: North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Annual meeting, New Orleans, USA, 21–23 October 2010

The symptoms of Irritable Bowel Syndrome with Constipation (IBS-C): results of qualitative interviews with children and their parents
Carson R, Arbuckle R, Abetz L, Lewis BE, Hunter L J, Johnston J, Shiff S J.
Qual Life Res 2010;19:6