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Building a bridge between patient and pharma

To what extent does the scientific relevance of a healthcare research question parallel its relevance from the patient’s perspective? In this article, we use a live example of a real-world study investigating the experiences of individuals living with Charcot-Marie-Tooth disease (CMT) to demonstrate the wide-reaching value of patient involvement in study design and development.

Building a bridge between patient and pharma: the CMT story

Amini F (Rare Revolution Magazine, 2022)

See here for more of our publications on Charcot-Marie-Tooth disease and other subjects.

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Read about Fatemeh, our Associate Medical Writer, on our Who we a re page.

Fatemeh Amini

September 8, 2025
Publications

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Supporting evidence-generation with expertise

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CORRELATE-UK Interim analysis: reported consistency of response to rimegepant in acute treatment of migraine in the first four attacks of a prospective real-world study

Nakajima K, O’Neil G, Abraham L, Johnston MC, Kilpatrick S, Cheong C, Fellows A, Petitjean C, Llewellyn S, Randall M, Walker R, Lambru G
(MTIS, 2026)

Interim analysis of CORRELATE-UK: A prospective real-world study of the patient-reported consistency of response to rimegepant in acute treatment of migraine

O’Neil G, Abraham L, Nakajima K, Johnston MC, Kilpatrick S, Cheong C, Fellows A, Petitjean C, Llewellyn S, Lambru G
(AHS, 2026)

Vitaccess Real MG Registry: baseline characteristics and patient-reported outcomes scores from an international Myasthenia Gravis patient registry

Amini F, Bagshaw E, Fellows A, Larkin M, Petitjean C, Gwathmey KG, Mahuwala Z, Sacca F, Habib A, Jacob S (EAN, 2026)

Interim analysis of CORRELATE-UK: A prospective real-world study of the patient-reported consistency of response to rimegepant in acute treatment of migraine.

O’Neil G, Abraham L, Nakajima K, Johnston MC, Kilpatrick S, Cheong C, Fellows A, Petitjean C, Llewellyn S, Lambru G. (AHS, 2026)

Are existing measurement tools accurately measuring health-related quality of life of informal caregivers?

Richards A, Carlton J, Biggane A, Chandler F. (ISPOR Europe, 2025)

Understanding the health-related quality of life (HRQoL) of patients living with dermatomyositis (DM) and polymyositis (PM) – A targeted literature review (TLR) and conceptual model development.

Rana S, Biggane A, Chinoy H, Lawrence J, Vincent S. (Annals of the Rheumatic Diseases, EULAR 2025)Publication: Annals of Rheumatic Diseases

Patient-reported impacts of Atrial fibrillation: a literature-based conceptual model

Knowles O, Lawrence J, Ringland C, Singh P, Llewellyn S. (PROMS, 2026)

Estimating health-state utility values for family-caregivers of patients with Duchenne muscular dystrophy using time trade-off valuation

Borecka O, Llewellyn S, Woollacott I, Richardson L, Fellows A, Lawrence J, Bottomley C, Biggane AM (JPRO, 2026)

A Novel International Patient Registry in Chronic Inflammatory Demyelinating Polyneuropathy Linking Clinical and Patient-Reported Outcomes Data: The Vitaccess Real CIDP (VRCIDP) Registry

Bowmar E, Larkin M, Habib A, Di Salvo N, Rajabally Y (AAN 2026)

Impact of Caring for Patients with Monocarboxylate Transporter 8 (MCT8) Deficiency on Caregivers’ Sleep: Results from an International Cross-Sectional Study

Ofori A, Larkin MJ, Georges N (PES 2025)

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Observational Studies

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Quantitative Research

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Building a bridge between patient and pharma

Building a bridge between patient and pharma: the CMT story

Supporting evidence-generation with expertise

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