Guide to Good Practice


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Albanese A, Barnes M P, Bhatia K P, Fernandez-Alvarez E, Filippini G, Gasser T, Krausss J K, Newton A, Rektor I, Savoiardo M and Valls-Sole (2006) ‘A systematic review of the diagnosis and treatment of primary (idiopathic) dystonia and dystonia plus syndromes: report of an EFNS/MDS-ES Task Force’. European Journal of Neurology Vol.13 pp. 433–444

Albanese A, Asmus F, Bhatia KP, Elia AE, Elibol B, Filippini G, Gasser T, Krauss JK, Nardocci N, Newton A, Valls-Solé J, (2011). EFNS guidelines on diagnosis and treatment of primary dystonias. Eur J Neurol 18:5 – 18

Albanese A, Bhatia K, Bressman S,  DeLong M, Fahn S. Fung V, Hallett M, Jankovic J, Jinnah H, Klein C, Lang A, Mink J, Teller J (2013). Phenomenology and classification of dystonia: A consensus update. Movement disorders, Vol 28 No 7. 863–873

Allen N, Lin JP, Lynch T, King M (2014). Status dystonicus:a practice guide. Dev Med Child Neurol.; 56(2):105–12

Bleton J-P (2007) Role of the Physiotherapist in Warner T T and Bressman S B (ed.) Clinical Diagnosis and Management
of Dystonia. London. Informa Healthcare 2007.

Dauer W, Burke R, Greene P and Fahn S (1998). Current concepts on the clinical features, aetiology and management of idiopathic cervical dystonia. Brain 121, 547– 560

Carr L (2009) Consultant Paediatric Neurologist Robert Surtees Memorial Lecture. The Annual Conference of the Dystonia Society, London, 7 November 2009

Cullis P, Walker P (1989). The treatment of Spasmodic torticollis. In: Quinn NP, Jenner PG, eds. Disorders of movement. San Diego: Academic Press, 1989:295– 301

Defazio G (2010) The epidemiology of primary dystonia: current evidence and perspectives, European Journal of Neurology Vol 17 (suppl. 1) pp 9– 14

Delnooz C, Horstink M, Tijssen M, van de Warrenburg B (2009). Paramedical treatment in primary dystonia:
A systematic review. Movement disorders, Vol 24. No 15, pp 2187– 2198.

Dias F, Kummer A, Doyle F, Harsanyi E, Cardoso F, Fontenelle L, and Teixeira A (2011). Psychiatric disorders in primary focal dystonia and in Parkinson’s disease. Neuropsychiatric disease treatment, 7: 111–116.

Edwards M, Quinn N and Bhatia K (2008) Parkinson’s Disease and Other Movement Disorders. Oxford Specialist Handbooks in Neurology, Oxford University Press 2008.

Gimeno H, Tustin K, Selway R, Lin JP (2012). Beyond the Burke-Fahn-Marsden Dystonia Rating Scale: Deep brain stimulation in childhood secondary dystonia. Eur J Paediatr Neurol. 2012;16(5):501-8.

Gimeno H, Lumsden D, Gordon A, et al (2013). Improvement in upper limb function in children with dystonia following deep brain stimulation. Eur J Paediatr Neurol. 17(4):353-60.

Gimeno H, Gordon A, Tustin K, Lin JP (2013). Functional priorities in daily life for children and young people with dystonic movement disorders and their families.Eur J Paediatr Neurol. Mar;17(2):161 – 8

Gimeno H, Tustin K; Lumsden D, Ashkan K, Selway R, Lin JP (2014). Evaluation Of Functional Goal Outcomes Using The Canadian Occupational Performance Measure (COPM) Following Deep Brain Stimulation (DBS) In Childhood Dystonia. Eur J Paediatr Neurol. pii: S1090-3798(14)00005 – 1

Great Britain, Department of Health, National Institute for Health and Clinical Excellence (2004) Selective peripheral denervation for cervical dystonia (IPG 80)

Gudex C, Hawthorne M, Butler A, Duffey P (1998). Effect of dystonia and botulinum toxin treatment on health-related quality of life. Movement disorders, Vol 13, No 6

Fasano A, Ricciardi L, Bentivoglio A, Canavese C, Zorzi G, Petrovic I, Kresojevic N, Kostić V, Svetel M, Kovacs N, Balas I, Roubertie A, Mishra D, Mariotti P, Temudo T, Nardocci M (2012). Status dystonicus: Predictors of outcome and progression patterns of underlying disease. Movement Disorders, Volume 27, Issue 6, pages 783–788, May.
Hacohen Y, Wright S, Siddiqui A, Pandya N, Lin JP, Vincent A, Lim M (2012). A clinico-radiological phenotype of voltage-gated potassium channel complex antibody-mediated disorder presenting with seizures and basal ganglia changes. Dev Med Child Neurol. Dec; 54(12):1157–9

Hacohen Y, Wright S, Waters P, Agrawal S, Carr L, Cross H, De Sousa C, Devile C, Fallon P, Gupta R, Hedderly T, Hughes E, Kerr T, Lascelles K, Lin JP, Philip S, Pohl K, Prabahkar P, Smith M, Williams R, Clarke A, Hemingway C, Wassmer E, Vincent A, Lim MJ (2013). Paediatric autoimmune encephalopathies: clinical features, laboratory investigations and outcomes in patients with or without antibodies to known central nervous system autoantigens. J Neurol Neurosurg Psychiatry. Jul; 84(7):748–55

Hacohen Y, Deiva K, Pettingill P, Waters P, Siddiqui A, Chretien P, Menson E, Lin JP, Tardieu M, Vincent A, Lim MJ (2013). N-methyl-D-aspartate receptor antibodies in post-herpes simplex virus encephalitis neurological relapse. Mov Disord. Sep 6

Hayflick S, Kruer M, Gregory A, Haack T, Kurian M, Houlden H, Anderson J, Boddaert N, Sanford L, Harik S, Dandu V, Nardocci N, Zorzi G, Dunaway T, Tarnopolsky M, Skinner S, Holden KR, Frucht S, Hanspal E, Schrander-Stumpel C, Mignot C, Héron D, Saunders DE, Kaminska M, Lin JP, Lascelles K, Cuno SM, Meyer E, Garavaglia B, Bhatia K, de Silva R, Crisp S, Lunt P, Carey M, Hardy J, Meitinger T, Prokisch H, Hogarth P, (2013). β-Propeller protein-associated neurodegeneration: a new X-linked dominant disorder with brain iron accumulation. Brain. Jun;136(Pt 6):1708–17. doi: 10.1093/brain/awt095. Epub 2013 May 17.PMID: 23687123

Korzeniewski S, Birbeck G, DeLano M, Potchen M, Paneth N. (2008) A systematic review of neuroimaging for cerebral palsy. J Child Neurol 23: 216-27

Lang (1989). Drug treatment of dystonia In: Quinn NP, Jenner PG, eds. Disorders of movement. San Diego: Academic Press, 313–21.

Lim V K (2007) Health Related Quality of Life in Patients with Dystonia and their Caregivers in New Zealand and Australia. Movement Disorders Vol. 22, No. 7, pp. 998–100

Lin JP (2011). The contribution of spasticity to the movement disorder of cerebral palsy using pathway analysis: does spasticity matter? Dev Med Child Neurol. 2011 Jan; 53(1): 7–9. doi: 10.1111/j.1469–8749.2010.03843
Lin JP, Lumsden D, Gimeno H, Kaminska M (2014). The impact and prognosis for dystonia in childhood including dystonic cerebral palsy: a clinical and demographic tertiary cohort study. J Neurol Neurosurg

Lumsden D, Kaminska M, Gimenino H, Tustin K, Baker L, Perides S, Ashkan K, Selway R, Lin J–P (2013). Proportion
of life lived with dystonia inversely correlates with response to pallidal deep brain stimulation in both primary and secondary childhood dystonia. Developmental Medicine and Child Neurology

Lumsden D, Lundy C, Fairhurst C, Lin JP (2013). Dystonia Severity Action Plan: a simple grading system for medical severity of status dystonicus and life-threatening dystonia. Dev Med Child Neurol. 55(7):671–2

Malone M, Strube M, Scogin F (1998). Meta-analysis of non-medical treatments for chronic pain. Pain, 34 (3): 231–244
McClelland V, Mills K, Siddiqui A, Selway R, Lin JP (2011). Central motor conduction studies and diagnostic magnetic resonance imaging in children with severe primary and secondary dystonia. Dev Med Child Neurol. Aug; 53(8):757–763. doi: 10.1111/j.1469–8749.2011.03981

Molho E, Agarwal N, Regan K, Higgins D, Factor S (2009). Effect of cervical dystonia on employment: A retrospective analysis of the ability of treatment to restore pre morbid employment status. Movement disorders, Vol 24. No 9, pp 1384–97

NHS Commissioning Board (2013). Clinical Commissioning Policy. Deep brain stimulation in movement disorders.
North West Neurosciences Partnership (Position statement 2006) Recommendations regarding the use of Botulinum Toxin in Adult Patients with Spasticity and Dystonia –A Report of the North West Botulinum Toxin Subgroup

Peall K, Smith D, Kurian M, Wardle M, Waite A, Hedderly T,Lin JP, Smith M, Whone A, Pall H, White C, Lux A, Jardine P, Bajaj N, Lynch B, Kirov G, O'Riordan S, Samuel M, Lynch T, King M, Chinnery P, Warner T, Blake D, Owen M, Morris H (2013). SGCE mutations cause psychiatric disorders: clinical and genetic characterization. Brain. Jan;136(Pt 1):294–303

Rice G, Kasher P, Forte G, Mannion N, Greenwood S, Szynkiewicz M, Dickerson J, Bhaskar S, Zampini M, Briggs T, Jenkinson E, Bacino C, Battini R, Bertini E, Brogan P, Brueton L, Carpanelli M, De Laet C, de Lonlay P, del Toro M, Desguerre I, Fazzi E, Garcia-Cazorla A, Heiberg A, Kawaguchi M, Kumar R, Lin JP, Lourenco C, Male A, Marques W Jr, Mignot C, Olivieri I, Orcesi S, Prabhakar P, Rasmussen M, Robinson R, Rozenberg F, Schmidt JL, Steindl K, Tan TY, van der Merwe WG, Vanderver A, Vassallo G, Wakeling EL, Wassmer E, Whittaker E Livingston J, Lebon P, Suzuki T, McLaughlin PJ, Keegan L, O'Connell M, Lovell S, Crow Y. (2012). Mutations in ADAR1 cause Aicardi-Goutières syndrome associated with a type I interferon signature. Nat Genet. Nov;44(11):1243–8

Rice G, Forte G, Szynkiewicz M, Chase D, Aeby A, Abdel-Hamid M, Ackroyd S, Allcock R, Bailey K, Balottin U, Barnerias C, Bernard G, Bodemer C, Botella M, Cereda C, Chandler K, Dabydeen L, Dale R, De Laet C, De Goede C, Del Toro M, Effat L, Enamorado N, Fazzi E, Gener B, Haldre M, Lin JP, Livingston J, Lourenco C, Marques W Jr, Oades P, Peterson P, Rasmussen M, Roubertie A, Schmidt J, Shalev S, Simon R, Spiegel R, Swoboda K, Temtamy S, Vassallo G, Vilain C, Vogt J, Wermenbol V, Whitehouse W, Soler D, Olivieri I, Orcesi S, Aglan M, Zaki M, Abdel-Salam G, Vanderver A, Kisand K, Rozenberg F, Lebon P, Crow YJ (2013). Assessment of interferon-related biomarkers in Aicardi-Goutières syndrome associated with mutations in TREX1, RNASEH2A, RNASEH2B, RNASEH2C, SAMHD1, and ADAR: a case-control study.
Lancet Neurol. Dec;12(12):1159–69

Ron M (2009). Primary focal dystonia – a disease of brain and mind: motor and psychiatric manifestations have a common neurobiological basis. Journal Neurosurgery Psychiatry 80:1059

Slawek J, Friedman A, Potulska A, Krystkowiak P, Gervais C, Banach M, Ochudlo S, Budrewicz S, Reclawowicz D, Rynkowski M, Opala G (2007). Factors affecting the health related quality of life of patients with cervical dystonia and the impact of botulinum toxin type A injections.Funct Neurol, 22(2): 95–100

Tassorelli C, Mancini F, Balloni L, Pacchetti C, Sandrini G, Nappi G and Martignoni E (2006). Botulinum toxin and neuromotor rehabilitation: An integrated approach to idiopathic cervical dystonia. Movement disorders, Vol 21. No 12, pp 2240–2243

The British Neurotoxin Network (2012). Responses to questionnaire. www.neurotoxinnetwork.org

The Dystonia Society (2011). Dystonia: A guide to good practice for health and social care professionals

The Dystonia Society (2012). Responses to questionnaire

Towsley K, Shevell M, Dagenais L (2011). Population-based study of neuroimaging findings in children with cerebral palsy. Eur J Paediatr Neurol 15: 29–35

Walkergate Park Centre for Neurorehabilitation and Neuropsychiatry (2010). Pathways for diagnosis and management of dystonia. Lesley Kidd, Nurse Manager, Neurology Rehabilitation Outpatients

Warner T T and Bressman S B (ed.) (2007) Clinical Diagnosis and Management of Dystonia. London. Informa Healthcare 

Whitaker J, Butler A, Semlven J and Barnes M P (2001) Botulinum toxin for people with dystonia treated by an outreach nurse practitioner: A comparative study between a home and a clinic treatment service. Archives of Physical Medicine and Rehabilitation Vol. 82 Iss.4 pp 480–484

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