Category: Dystonia: Clinical Trials and Therapy
Objective: We conducted a survey to characterize real-world treatment of CD patients with focus on treatment duration, clinical parameters and awareness of clinical resistance as a potential complication.
Background: Cervical dystonia (CD) is a life-long condition which requires repeated injections of BoNT for symptom management. Collection of clinical parameters can be heterogeneous in a real-world setting limiting analysis.
Method: 147 centers in 7 countries in Europe and Canada responded to an online survey of 15 questions. Parameters were CD patient population, BoNT formulation, routine clinical parameters and experience with clinical resistance.
Results: 49 centers completed the survey with a reported total of 5322 CD patients on follow-up. 39% received incobotulinumtoxinA, 35% onabotulinumtoxinA and 25% abobotulinumtoxinA. 58% of patients received the same formulation. Treatment duration was 5–10 years in 70% of patients. The most frequently recorded data points were efficacy (96%), dose (94%), duration of effect (88%) and safety/tolerability (88%). TWSTRS (65%), VAS (51%), and Investigator’s Global Impression (43%) were the most commonly used scales. 71% of centers reported to not routinely collect data on quality of life (QoL). While all centers in Germany reported having observed signs of clinical resistance in their patients this was only the case for 36% of centers in Spain.
Conclusion: This international survey revealed a large proportion of patients receiving long-term BoNT treatment suggesting sustained patient satisfaction over several years. QoL related outcomes are sparsely used but mandatory for a modern patient-centric approach. Surprisingly, awareness of clinical resistance differs regionally which might ultimately affect treatment regimen and outcomes.
The abstract has been submitted to the ISPRM 2022 in Lisboa from 3rd-7th July 2022 and is currently under review.
To cite this abstract in AMA style:
B. Waeschle, H. Stark, P. Albrecht. Characterization of routine botulinum toxin (BoNT) therapy and patient population in cervical dystonia [abstract]. Mov Disord. 2022; 37 (suppl 2). https://www.mdsabstracts.org/abstract/characterization-of-routine-botulinum-toxin-bont-therapy-and-patient-population-in-cervical-dystonia/. Accessed June 15, 2025.« Back to 2022 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/characterization-of-routine-botulinum-toxin-bont-therapy-and-patient-population-in-cervical-dystonia/