publications

Working in collaboration with our sponsors, clinical experts, and patient groups, we distill the data from our studies into compelling publications in peer-reviewed journals and conference posters.

Take a look at our publications archive to see how our work amplifies the voices of our study participants.

Vitaccess
Vitaccess

Which data are migraine patient registries collecting? A targeted review

Ofori A, Llewellyn S, Bottomley C, Kousoulakou H (Value in Health, 23(2): S746)

Gamification – the future of real-world patient-reported studies? Analysis of the ethical and legal challenges of applying gamification in observational studies using smartphone apps: a review of the UK and France

Richards A, Bottomley C (Quality of Life Research, 29: S129)

Treatment patterns and healthcare resource use in primary hypercholesterolaemia and mixed dyslipidaemia: results of a UK Delphi panel

Llewellyn S, Bilitou A, Dunton K, Åkesson C, Hall K, Quinn C (EAS, 2020)

A conceptual framework for the approach to the evluation of oncology survival benefit in health technology assessment

Monnickendam G, Larkin M, Larkin J, Quinn C (ISPOR EU 2020)

What role does caregiver burden play in health technology assessment bodies’ appraisals of highly specialized technologies?

Ofori A, Llewellyn S, Bottomley C, Kousoulakou H (ISPOR EU 2020)

Sickle cell disease patient registries are not collecting enough data

Llewellyn S, Doe A, Åkesson C, Kousoulakou H, Quinn C, Larkin M (ISPOR US 2020)

Complexities in localizing participant profile survey questions in real-world studies for smartphone apps

Kretz S, Richards A (Quality of Life Research, 29: S135)

Manuscript: The clinical and cost-effectiveness of supplemental parenteral nutrition in oncology

Webb N, Fricke J, Hancock E, Trueman D, Ghosh S, Winstone J, Miners A, Shepelev J, Valle JW (ESMO Open. 2020 Jun 1;5(3):e000709)

Challenges with using paper format legacy Patient Reported Outcome Measures (PROMs) in digital real-world evidence (RWE) studies for apps

Kretz S, Spinage C, Bottomley C (Quality of Life Research, 29: S137)
MyRealWorld MG

Real-world patient-reported impact of myasthenia gravis: initial data from the MyRealWorld MG study

Berrih-Aknin S, Claeys KG, Friconneau M, Mantegazza R, Meisel A, Murai H, Palace J, Saccà F, Bagshaw E, Larkin M, Beauchamp J, De Ruyck F, Paci S, Phillips G (AANEM, 2021)

MANUSCRIPT: Patient-reported impact of myasthenia gravis in the real world: protocol for a digital observational study (MyRealWorld MG)

Berrih-Aknin S, Claeys K, Law N, Mantegazza R, Murai H, Sacca F, Dewilde S, Janssen M, Bagshaw E, Kousoulakou H, Larkin M, Beauchamp J, Leighton T, Paci S (BMJ Open 2021;11:e048198. doi: 10.1136/bmjopen-2020-048198)

Capturing the patient-reported impact of myasthenia gravis in the real-world setting using a smartphone application

Assouly P, Berrih-Aknin S, Claeys K, Murai H, Palace J, Saccà F, Baggi F, Bagshaw E, Kousoulakou H, Larkin M, Beauchamp J (Muscle & Nerve, 62: S65-S66)

Capturing the patient-reported impact of myasthenia gravis in the real-world setting using a smartphone application

Palace J, Assouly P, Claeys KG, Saccà F, Bagshaw E, Kousoulakou H, Larkin M, Beauchamp J, Leighton T, Paci S (ABN, 2020)

Capturing the patient-reported impact of myasthenia gravis in the real-world setting using a smartphone application

Meisel A, Assouly P, Berrih-Aknin S, Claeys KG, Murai H, Palace J, Saccà F, Baggi F, Bagshaw E, Kousoulakou H, Larkin M, Beauchamp J, Leighton T, Paci S (DGN, 2020)

Disease burden and quality of life in patients with Charcot-Marie-Tooth disease type 1A, 2, 4 and X in Europe and the US measured using a digital app

Ziemssen T, Thomas FP, Sivera R, Saporta M, Genovese F, Gray A, Hollett C, Moore A, Rego M, Boutalbi Y, Monteiro K, Paoli X, Hall K, Llewellyn S, Larkin M, Ouyang C, Quinn C (Muscle & Nerve, 62: S69-S70)

MANUSCRIPT: Patient-reported impact of Charcot-Marie-Tooth disease: protocol for a real-world digital lifestyle study

Thomas FP, Saporta M, Attarian S, Sevilla T, Mascaró RS, Fabrizi GM, Genovese F, Gray A, Bull S, Tanesse D, Rego M, Moore A, Hollett C, Monteiro K, Paoli X, Llewellyn S, Larkin M, Boutalbi Y (Neurodegenerative Disease Management, 2021; 11(1): 21-33)

Patient-reported symptom burden of Charcot-Marie-Tooth disease Type 1a in Europe and the US measured using a digital app

Thomas FP, Attarian S, Gray A, Hollett C, Moore A, Boutalbi Y, Monteiro K, Paoli X, Hall K, Llewellyn S, Ouyang C, Larkin M (Value in Health, 23(1): S343)

Patient-reported burden of Charcot-Marie-Tooth disease Type 1a In Europe and the US measured using a digital app

Thomas FP, Attarian S, Gray A, Hollett C, Moore A, Boutalbi Y, Monteiro K, Paoli X, Hall K, Llewellyn S, Ouyang C, Larkin M (Value in Health, 23(1): S343-344)

Productivity losses in people with Charcot-Marie-Tooth disease in the EU and US: interim results from an international digital real-world evidence study

Ziemssen T, Thomas FP, Attarian S, Sevilla T, Gray A, Hollett C, Moore A, Bertrand V, Boutalbi Y, Larrazet M, Monteiro K, Paoli X, Llewellyn S, Bagshaw E, Kousoulakou H, Larkin M (ISPOR Europe, 2019)

Healthcare resource use in Charcot-Marie-Tooth disease in the EU and US: interim results from an international digital real-world study

Ziemssen T, Thomas FP, Attarian S, Sevilla T, Gray A, Hollett C, Moore A, Bertrand V, Boutalbi Y, Larrazet M, Monteiro K, Paoli X, Bagshaw E, Kousoulakou H, Larkin M (ISPOR Europe, 2019)

Demographics and treatment patterns for Charcot-Marie-Tooth disease in the EU and US: interim results from an international digital real-world study

Ziemssen T, Thomas FP, Attarian S, Sevilla T, Gray A, Hollett C, Moore A, Bertrand V, Boutalbi Y, Larrazet M, Monteiro K, Paoli X, Bagshaw E, Kousoulakou H, Larkin M  (ISPOR Europe, 2019)

Diversity in the Charcot–Marie–Tooth disease population in the United Kingdom and United States: insights from a digital real-world observational study

Ziemssen T, Thomas FP, Attarian S, Sevilla T, Gray A, Hollett C, Moore A, Bertrand V, Boutalbi Y, Larrazet M, Monteiro K, Paoli X, Llewellyn S, Bagshaw E, Kousoulakou H, Larkin M  (AANEM, 2019)

Treatment of the Charcot-Marie-Tooth disease population in the United Kingdom and United States: insights from a digital real-world observational study

Ziemssen T, Attarian S, Thomas FP, Moore A, Tanesse D, Paoli X, Bertrand V, Boutalbi Y, Monteiro K, Bagshaw E, Kousoulakou H, Larkin M (AANEM, 2019)

Treatment patterns for Charcot-Marie-Tooth disease in the UK and US: insights from a digital real-world observational study

Ziemssen T, Attarian S, Thomas FP, Moore A, Tanesse D, Paoli X, Bertrand V, Boutalbi Y, Bagshaw E, Kousoulakou H, Larkin M (EAN, 2019)

Care standards for Charcot-Marie-Tooth disease in the UK and US: insights from a digital real-world observational study

Ziemssen T, Attarian S, Thomas FP, Moore A, Tanesse D, Paoli X, Bertrand V, Boutalbi Y, Bagshaw E, Kousoulakou H, Larkin M (EAN, 2019)

Diversity in the Charcot-Marie-Tooth disease population in the UK and US: insights from a digital real-world observational study

Ziemssen T, Attarian S, Thomas FP, Moore A, Tanesse D, Paoli X, Bertrand V, Boutalbi Y, Bagshaw E, Kousoulakou H, Larkin M (EAN, 2019)

Digitally assessed real-world diversity in people with Charcot-Marie-Tooth disease in the UK and US

Ziemssen T, Attarian S, Thomas FP, Moore A, Tanesse D, Paoli X, Bertrand V, Boutalbi Y, Bagshaw E, Kousoulakou H, Larkin M (PNS, 2019)

Digitally assessed patient-reported real-world care standards for Charcot-Marie-Tooth disease in the UK and US

Ziemssen T, Attarian S, Thomas FP, Moore A, Tanesse D, Paoli X, Bertrand V, Boutalbi Y, Bagshaw E, Kousoulakou H, Larkin M (PNS, 2019)

Patient-reported real-world care standards for Charcot-Marie-Tooth disease in the UK and US assessed using a digital ‘bring your own device’ platform

Ziemssen T, Attarian S, Thomas FP, Moore A, Tanesse D, Paoli X, Bertrand V, Boutalbi Y, Bagshaw E, Kousoulakou H, Larkin M (ISPOR US, 2019)

Patient-reported real-world treatment patterns for Charcot-Marie-Tooth disease in the UK and US assessed using a digital ‘bring your own device’ platform

Ziemssen T, Attarian S, Thomas FP, Moore A, Tanesse D, Paoli X, Bertrand V, Boutalbi Y, Bagshaw E, Kousoulakou H, Larkin M (ISPOR US, 2019)

Development of a digital app and innovative recruitment for an international real-world observational study in Charcot-Marie-Tooth disease

Ziemssen T, Attarian S, Thomas FP, Tanesse D, Paoli X, Bertrand V, Boutalbi Y, Kousoulakou H, Larkin M (ISPOR Europe, 2018)
myThalLog

MANUSCRIPT: Patient‑ and Caregiver‑Reported Burden of Transfusion‑Dependent β‑Thalassemia Measured Using a Digital Application

Paramore C, Levine L, Bagshaw E, Ouyang C, Kudlac A, Larkin M (Springer Nature’s, The Patient – Patient-Centered Outcomes Research, 2020)

Patient-reported burden of transfusion-dependent Beta-Thalassemia in the USA and UK measured using a digital app

Paramore C, Helfer J, Levine L, Kousoulakou H, Larkin M (ISPOR Europe, 2019)

How do patients manage side effects during melanoma treatment? The importance of social support and doctor–patient communication

Ofori A, Hall K, Bottomley C, Larkin M, Heinrich M (The Christie School of Oncology, Melanoma Study Day 2021)

Rewarding participants through charitable donations to Melanoma UK motivates recruitment and engagement: a bring your own device study example

Hall K, Ouyang C, Chilongo A, Llewellyn S, Quinn C, Larkin M (Quality of Life Research; 29: S91-S92)

Patient-centricity in action: using patient feedback to adapt the PRO-CTCAE instrument in a real-world study

Llewellyn S, Hall K, Camidge L, Bottomley C, Nixon A, Larkin M (Quality of Life Research, 29: S91)

Melanoma patient registries: a targeted review and comparison of datasets

Hall K, Llewellyn S, Bottomley C, Larkin M (Quality of Life Research, 29: S113)

Assessing the value of real-world evidence in melanoma in health technology assessment appraisals

Llewellyn S, Doe A, Quinn C (DIA Europe, 2020)

Targeted review of adverse events associated with treatments for stage 3 and 4 melanoma

Llewellyn S, Bagshaw E, Åkesson C, Kousoulakou H, Larkin M (ISPOR Europe, 2019)

Adverse events associated with immunotherapies used in the treatment of stage 3 and 4 melanoma

Llewellyn S, Åkesson C, Kousoulakou H, Larkin M (ISPOR US, 2019)

Patient-reported real-world treatment patterns for melanoma in the UK measured using a digital ‘bring your own device’ platform

Larkin J, Cannon D, Nuttall G, Au L, Hunter N, Spain L, Turajlic S, Åkesson C, Llewellyn S, Nixon A, Kousoulakou H, Larkin M, Wiseman T (ISPOR US, 2019)

Real-world HRQL in patients with melanoma derived using a digital ‘Bring-Your-Own-Device’ platform

Larkin J, Nuttall G, Cannon D, Au L, Spain L, Hunter N, Turajlic S, Nixon A, Kousoulakou H, Larkin M, Wiseman T (PROMS Conference, 2018)

Taking the burden out of symptom reporting in patients with melanoma using a digital real-world evidence platform

Au L, Nuttall G, Cannon D, Spain L, Hunter N, Turajlic S, Nixon A, Kousoulakou HLarkin M, Larkin J, Wiseman T (ISPOR US, 2018)

Real-world EQ-5D-5L utility values in patients with melanoma derived using a digital ‘Bring-Your-Own-Device’ platform

Larkin J, Nuttall G, Cannon D, Au L, Spain L, Hunter N, Turajlic S, Nixon A, Kousoulakou H, Larkin M, Wiseman T (ISPOR US, 2018)

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