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Cervical Dystonia: Symptom tracking and patient-centred care

By April 21, 2022No Comments


Ipsen is a global biopharmaceutical group specialising in oncology, neuroscience and rare diseases. A key focus area for Ipsen is cervical dystonia, a movement disorder in which involuntary muscular contractions occur primarily in the neck muscles. Patients with cervical dystonia often suffer considerable symptom burden, with significant impacts on their daily life.


Comprehensive care in cervical dystonia could be improved with an indivudualised patient-centered approach. Understanding the burden of cervical dystonia, unmet patient needs and barriers to treatment were identified as key areas with the potential to unlock meaningful changes in clinical management.

Solution and Impact

Working in partnership with Ipsen, along with insights from patients and clinicians, patientMpower designed a solution to support patient-centred care of those with cervical dystonia. A bespoke electronic symptom diary and quality of life questionnaire (the DystoniaDiary app) enables patients to track their condition from home. Future versions will enable sharing of the patient-recorded information in real time with their clinical team. This helps clinicians better understand the longitudinal symptom profile of their individual patients, in particular aiding the identification of symptom re-emergence between botulinum neurotoxin type A (BoNT-A) injections. This aids clinical decision making and treatment optimisation. The development of a robust pharmacovigilance procedure ensured that the DystoniaDiary application could be implemented in compliance with relevant pharmacovigilance legislation and processes.

The project is currently being evaluated in an IRB-approved user experience study with clinical outcome data expected shortly, but already the benefits of this programme are being felt. Through its support of this innovative patient-centric approach, Ipsen is being viewed as a true healthcare partner in cervical dystonia by specialist clinicians. Early feedback suggests the programme is of very high clinical value, with patients feeling more engaged in their own care and reassured by ongoing clinician oversight. De-identified data is also generating valuable insights to help better understand the unmet needs of this patient population.

Paul Byrne, General Manager at Ipsen Ireland explains, “At Ipsen, we are constantly searching for ways to improve disease management and comprehensive care with a patient-centered approach. It was this common ideology, combined with their innovation focus and pharmaceutical industry experience, that made patientMpower an obvious partner in our work to optimise management of cervical dystonia. The clinicians we work with are really excited by this new model of care and the real value the patientMpower platform offers them, unlocking insights which can directly impact the way they manage their patients.”