OUR PUBLICATIONS

 
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vitaccess PUBLICATIONS

•“Challenges in localization of patient-reported outcomes instruments destined for smartphone applications” Richards A, Bagshaw E, Williams H, Vitaccess Ltd, Oxford, UK (ISOQOL, 2019)

•“The patient’s voice. Innovation in the localisation methodology of real-world evidence ‘Bring Your Own Device’ smartphone apps for quality of life observational studies” Richards A, Williams H, Vitaccess Ltd, Oxford, UK (ISOQOL, 2019)

Innovative partnerships with patients and patient advocacy groups in digital observational rare disease studies” Llewellyn S, Bagshaw E, Williams H, Larkin M - Vitaccess Ltd (Global Genes, Rare Patient Advocacy Summit, 2019)

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TRANSFUSION DEPENDENT BETA-THALASSEMIA PUBLICATIONS

•“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, bluebird bio, Massachusetts, US; Self-employed medical consultant, San Francisco, CA, US; Vitaccess Ltd, Oxford, UK (ISPOR, 2019)

 
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CHARCOT-MARIE-TOOTH DISEASE PUBLICATIONS

• “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, Zentrum für klinische Neurowissenschaften, Klinik und Poliklinik für Neurologie, Universitätsklinikum Carl Gustav Carus an der Technischen Universität Dresden, Dresden, Germany, Hackensack University Medical Center and Hackensack Meridian School of Medicine, Hackensack, NJ, US, Assistance Publique - Hopitaux de Marseille, Marseille, France, Hospital Universitari i Politècnic La Fe, Valencia, Spain, Charcot-Marie-Tooth Association, Glenolden, PA, US, Hereditary Neuropathy Foundation, New York, NY, US, Pharnext, Issy-les-Moulineaux, France, Vitaccess Ltd, Oxford, UK (ISPOR, 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, Zentrum für klinische Neurowissenschaften, Klinik und Poliklinik für Neurologie, Universitätsklinikum Carl Gustav Carus an der Technischen Universität Dresden, Dresden, Germany, Hackensack University Medical Center and Hackensack Meridian School of Medicine, Hackensack, NJ, US, Assistance Publique - Hopitaux de Marseille, Marseille, France, Hospital Universitari i Politècnic La Fe, Valencia, Spain, Charcot-Marie-Tooth Association, Glenolden, PA, US, Hereditary Neuropathy Foundation, New York, NY, US, Pharnext, Issy-les-Moulineaux, France, Vitaccess Ltd, Oxford, UK (ISPOR, 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,  Zentrum für klinische Neurowissenschaften, Klinik und Poliklinik für Neurologie, Universitätsklinikum Carl Gustav Carus an der Technischen Universität Dresden, Dresden, Germany, Hackensack University Medical Center and Hackensack Meridian School of Medicine, Hackensack, NJ, US, Assistance Publique - Hopitaux de Marseille, Marseille, France, Hospital Universitari i Politècnic La Fe, Valencia, Spain, Charcot-Marie-Tooth Association, Glenolden, PA, US, Hereditary Neuropathy Foundation, New York, NY, US, Pharnext, Issy-les-Moulineaux, France, Vitaccess Ltd, Oxford, UK (ISPOR, 2019)

“Treatment of Charcot–Marie–Tooth disease 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 X6, Bertrand V, Boutalbi Y, Monteiro K, Bagshaw E, Kousoulakou H, Larkin M, Zentrum für klinische Neurowissenschaften, Klinik und Poliklinik für Neurologie, Universitätsklinikum Carl Gustav Carus an der Technischen Universität Dresden, Dresden, Germany, Assistance Publique - Hopitaux de Marseille, Marseille, France, Hackensack UniversityMedical Center and Hackensack Meridian School of Medicine, Hackensack, NJ, US,Hereditary Neuropathy Foundation, New York, NY, US, European CMT Federation, France, Pharnext, Issy-les-Moulineaux, France, Vitaccess Ltd, Oxford, UK (AANEM, 2019)

• “Diversity in the Charcot–Marie–Tooth disease population in the United Kingdom and United States: insights from a digital real-world observational studyZiemssen T, Attarian S, Thomas FP, Moore A, Tanesse D, Paoli X, Bertrand V, Boutalbi Y, Monteiro K, Bagshaw E, Kousoulakou H, Larkin M? Zentrum für klinische Neurowissenschaften, Klinik und Poliklinik für Neurologie, Universitätsklinikum Carl Gustav Carus an der Technischen Universität Dresden, Dresden, Germany, Assistance Publique - Hopitaux de Marseille, Marseille, France, Hackensack UniversityMedical Center and HackensackMeridian School of Medicine, Hackensack, NJ, US, Hereditary Neuropathy Foundation, NewYork, NY, US, European CMT Federation, France, Pharnext, Issy-les-Moulineaux, France, Vitaccess Ltd, Oxford, UK  (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)

 
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MELANOMA PUBLICATIONS

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 melanomaLlewellyn 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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