+1 Recommend
0 collections
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      INTEREST IN CD2, a global patient-centred study of long-term cervical dystonia treatment with botulinum toxin


      Read this article at

          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.



          Longitudinal cohort studies provide important information about the clinical effectiveness of an intervention in the routine clinical setting, and are an opportunity to understand how a population presents for treatment and is managed.


          INTEREST IN CD2 (NCT01753349) is a prospective, international, 3-year, longitudinal, observational study following the course of adult idiopathic cervical dystonia (CD) treated with botulinum neurotoxin type A (BoNT-A). The primary objective is to document long-term patient satisfaction with BoNT-A treatment. Here we report baseline data.


          This analysis includes 1036 subjects (67.4% of subjects were female; mean age was 54.7 years old; mean TWSTRS Total score was 31.7). BoNT-A injections were usually given in line with BoNT-A prescribing information. The most commonly injected muscles were splenius capitis (87.3%), sternocleidomastoid (82.6%), trapezius (64.3%), levator scapulae (40.9%) and semispinalis capitis (26.9%); 35.5% of subjects were injected using a guidance technique. Most subjects (87.8%) had been previously treated with BoNT-A (median interval between last pre-study injection and study baseline was 4 months); of these 84.8% reported satisfaction with BoNT-A treatment at peak effect during their previous treatment cycle and 51.5% remained satisfied at the end of the treatment. Analyses by geographical region revealed heterogeneity in the clinical characteristics and BoNT-A injection practice of CD subjects presenting for routine treatment.


          These baseline analyses provide sizeable data regarding the epidemiology and clinical presentation of CD, and demonstrate an international heterogeneity of clinical practice. Future longitudinal analyses of the full 3-year study will explore how these factors impact treatment satisfaction.

          Electronic supplementary material

          The online version of this article (10.1007/s00415-017-8698-2) contains supplementary material, which is available to authorized users.

          Related collections

          Most cited references17

          • Record: found
          • Abstract: found
          • Article: not found

          Idiopathic cervical dystonia: clinical characteristics.

          We reviewed detailed clinical features of 266 patients with idiopathic cervical dystonia, commonly called spasmodic torticollis. Mean age at onset (41 years), female-to-male ratio (1.9:1), clustering of onset between ages 30 and 59 (70%), familial history of dystonia (12%), and remissions (9.8%) were similar to those found in previous studies. In contrast to the single prior large clinical study of this disorder, no predominance of right-handers or significant thyroid disease was found. Pain, which occurred in 75% of patients and contributed to disability score (p less than 0.01), distinguishes this syndrome from all other focal dystonias. Pain was also strongly associated with constant (vs. intermittent) head turning, severity of head turning, and presence of spasm. Eighty-three percent of patients had deviation of the head of greater than 75% of the time when sitting with the head unsupported (constant head deviation at rest). Of the 97% who had head turning, 81% also had head tilting in various combinations. The 23% with hand tremor had an older age at onset (mean, 46 vs. 41 years; p less than 0.05). An earlier age at onset (p less than 0.05) was seen in patients with a family history of dystonia (mean, 36 years), with trauma shortly preceding symptoms (mean, 36 years), with a change in the direction of head turning (mean, 30 years), and with remissions (mean, 33 years). Jerky movements or forced transient spasms of the head occurred in 62% of the patients, and these patients would be the ones for whom the designation "spasmodic torticollis" could logically apply.(ABSTRACT TRUNCATED AT 250 WORDS)
            • Record: found
            • Abstract: found
            • Article: not found

            The impact of blepharospasm and cervical dystonia on health-related quality of life and depression.

            The aim of the study was to evaluate and compare health-related quality of life (HR-QoL) and depression in essential blepharospasm (BSP) and idiopathic cervical dystonia (CD), to identify the clinical and demographic factors associated with poor HR-QoL in both disorders and to analyse the effect of Botulinum Toxin A (BtxA) therapy. Two hundred-twenty consecutive patients with BSP (N = 89, 62 % women, mean age 64 years, mean disease duration 7 years) and CD (N = 131, 64 % women, mean age 53 years, mean disease duration 8 years) recruited from routine referrals to eight Austrian dystonia clinics were included. HR-QoL was measured by the Short Form 36 (SF-36) and depression by the Beck Depression Inventory (BDI). At baseline, patients with CD and BSP scored significantly worse in all eight SF-36 domains compared with an age-matched community sample. In addition, 47 % of patients with CD and 37 % of those with BSP were depressed. Women with BSP scored significantly lower in all SF-36 domains and were more depressed than male patients. In contrast, there was no significant effect of gender on HR-QoL and depression in CD. Neck pain had a significant impact on all SF-36 domains and represented the main determinant of depression in CD. Although BtxA therapy resulted in a significant improvement of clinical symptoms in BSP and CD, HR-QoL did not improve in BSP and only two of the eight SF-36 domains improved significantly in patients with CD. The present study for the first time demonstrated that BSP has a substantial impact on health status emphasizing the need for psychological support with interventions aimed at treating depression in these patients. Our results provide further evidence for the profound impact of CD on HR-QoL and indicate the importance of an adequate management of neck pain in addition to reducing the severity of dystonia in CD. The mismatch between objective BtxA derived improvement of dystonia and lack of change of HR-QoL as determined by the SF-36 illustrates the need for optimized disease specific quality of life rating scales in patients with craniocervical dystonia.
              • Record: found
              • Abstract: found
              • Article: not found

              What are the determinants of quality of life in people with cervical dystonia?

              Little is known about the quality of life in patients with cervical dystonia, although pain and depression are relatively common. To test the hypothesis that an individual's ability to cope with the disease will modify the association of intrinsic, extrinsic, and disease related factors with quality of life. Patients with cervical dystonia diagnosed by a movement disorder specialist were recruited from seven European countries. Data on quality of life (SF-36), measures of coping, and intrinsic, extrinsic, and disease related factors were collected by a self completed postal questionnaire. 289 patients (101 men and 188 women), mean age 55 years, completed the questionnaire. Both physical and mental quality of life scores were predicted by self esteem and self deprecation, educational level, employment status, social support, response to botulinum toxin, disease severity, social participation, stigma, acceptance of illness, anxiety, and depression. In multivariable analyses, the strongest predictors were anxiety and depression. Severe depression was associated with a 19.1 point decrement in the physical summary score (95% confidence interval, -31.7 to -6.6; p = 0.003); however, disease duration and severity remained predictors. Care for patients with cervical dystonia must not only focus on reducing the severity of the dystonia but also on the psychological wellbeing of the patient. Interventions aimed at treating depression or anxiety, especially of a cognitive nature, may have a large impact on improving quality of life.

                Author and article information

                020 8383 3309 , peter.misra@virgin.net
                J Neurol
                J. Neurol
                Journal of Neurology
                Springer Berlin Heidelberg (Berlin/Heidelberg )
                21 December 2017
                21 December 2017
                : 265
                : 2
                : 402-409
                [1 ]ISNI 0000 0001 0693 2181, GRID grid.417895.6, Department of Neurology, , Imperial College Healthcare NHS Trust, ; London, UK
                [2 ]Department of Neurology, Santa Maria University Hospital, Terni, Italy
                [3 ]ISNI 0000 0004 1936 9916, GRID grid.412807.8, Vanderbilt Neuroscience Institute, , Vanderbilt University Medical Center, ; Nashville, TN USA
                [4 ]ISNI 0000 0004 1937 0722, GRID grid.11899.38, Institute of Physical Medicine and Rehabilitation, , São Paulo University Hospital, ; Sao Paulo, Brazil
                [5 ]ISNI 0000 0001 1957 4504, GRID grid.476474.2, Ipsen Pharma, ; Boulogne-Billancourt, France
                © The Author(s) 2017

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                : 27 September 2017
                : 22 November 2017
                : 3 December 2017
                Funded by: Ipsen Pharma
                Original Communication
                Custom metadata
                © Springer-Verlag GmbH Germany, part of Springer Nature 2018

                botulinum toxin,cervical dystonia,observational study,tremor
                botulinum toxin, cervical dystonia, observational study, tremor


                Comment on this article