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Launching a Research Initiative: The Canadian Pediatric Epilepsy Network (CPEN)

Published online by Cambridge University Press:  02 December 2014

Sharon Whiting ,
Peter Camfield ,
Samuel Wiebe ,
Maryse Lassonde ,
Hannelore Sauerwein  and
Lionel Carmant
Sharon Whiting
Affiliation:
University of Ottawa, Ontario, Canada
Peter Camfield
Affiliation:
Dalhousie University, Halifax, Nova, Scotia
Samuel Wiebe
Affiliation:
University of Western Ontario, London, Ontario, Canada
Maryse Lassonde
Affiliation:
l’Université de Montréal, Montreal, QC, Canada
Hannelore Sauerwein
Affiliation:
l’Université de Montréal, Montreal, QC, Canada
Lionel Carmant
Affiliation:
l’Université de Montréal, Montreal, QC, Canada
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Abstract:

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The Canadian Pediatric Epilepsy Network is a network of scientists and health care professionals in partnership with organizations which provide education and support to children with epilepsy. The objective of the network is to gain a better understanding of childhood epilepsy through collaborative research conducted with doctors, psychologists, nurses, social workers, educators and scientists across Canada. The network was launched at a meeting in Ottawa in the spring of 2000 where several oral presentations addressed the issues of the fundamental questions of epilepsy, the economic impact and the neuropsychology of childhood epilepsy. The intent was to provoke discussion on future areas of research for the network.

Résumé:

RÉSUMÉ:

Le Réseau canadien de la pédiatrie et de l’épilepsie est un réseau de chercheurs et de professionnels de la santé agissant en partenariat avec des organismes d’éducation et de soutien aux enfants épileptiques. L’objectif de ce réseau est d’acquérir une meilleure compréhension de l’épilepsie chez l’enfant par la recherche effectuée en collaboration à travers le Canada par des médecins, des psychologues, des infirmières, des travailleurs sociaux, des éducateurs et des chercheurs. Le réseau a été lancé au printemps 2000, lors d’une réunion à Ottawa où plusieurs présentations orales ont traité de questions fondamentales en épilepsie ainsi que de l’impact économique et de la neuropsychologie de l’épilepsie chez l’enfant. L’objectif était de susciter la discussion sur les avenues de recherche du réseau.

Type
Research Article
Information
Canadian Journal of Neurological Sciences , Volume 29 , Issue 4 , November 2002 , pp. 364 - 371
Copyright
Copyright © The Canadian Journal of Neurological 2002

References

1. Jambaqué, I, Lassonde, M, Dulac, O. The Neuropsychology of Childhood Epilepsy, New York: Plenum Press, New York, 2001.CrossRefGoogle Scholar
2. Jalava, M, Sillanpäa, M. Concurrent illness in adults with childhood-onset epilepsy. Epilepsia 1996;37:1155–1163.Google Scholar
3. Gessner, U, Sagmeister, M, Horisberger, B. The cost of epilepsy in Switzerland. Int J Health Sci 1993;4:121–128.Google Scholar
4. Begley, CE, Annegers, JF, Lairson, DR, Reynolds, TF. Methodological issues in estimating the cost of epilepsy. Epilepsy Res 1999;33: 39–55.CrossRefGoogle ScholarPubMed
5. Ettinger, AB, Weisbrot, DM, Nolan, EE, et al. Symptoms of depression and anxiety in pediatric epilepsy patients. Epilepsia 1998;39(6):595–599.Google Scholar
6. Stark, RE, Bleilek, K, Brandt, J, Freeman, J, Vining, G. Speech-language outcomes of hemispherectomy in children and adults. Brain Lang 1995; 51:406–421.Google Scholar
7. Lassonde, M. Neuropsychological and psychological impact of seizure disorders on children. Proceedings of the Johns Hopkins Advanced Studies in Medicine 2001; 1(4):166–172.Google Scholar
8. Landau, W, Kleffner, A. Syndrome of acquired aphasia with convulsive disorder in children. Neurology 1957; 7:523–530.Google Scholar
9. Canadian study group for childhood epilepsy. Clobazam has equivalent efficacy in carbamazepine and phenytoin as monotherapy for childhood epilepsy. Epilepsia 1998;39:952–959.Google Scholar
10. Peters, AC, Brouwer, OF, Gerts, AT, et al. Randomized prospective study of early discontinuation of AEDs in children with epilepsy. Neurology 1998;50:724–730.CrossRefGoogle ScholarPubMed
11. Wiebe, S, Bellhouse, DR, Fallahay, C, Eliasziw, M. Burden of epilepsy: the Ontario Health Survey. Can J Neurol Sci 1999;26:263–270.Google Scholar
12. Jambaqué, I, Mottron, L, Chiron, C. Neuropsychological outcome in children with West syndrome: A “human model” for autism. In: Jambaqué, I, Lassonde, M, Dulac, O (Eds.), The Neuropsychology of Childhood Epilepsy. New York: Plenum Press, 2001: 175–183.Google Scholar
13. Grigonis, AM, Murphy, EH. The effects of epileptic activity on the development of callosal projections. Brain Res Dev Brain Res 1994;77:251–255.Google Scholar
14. Bayard, S, Lassonde, M. Cognitive, sensory and motor adjustment to hemispherectomy. In: Jambaqué, I, Lassonde, M, Dulac, O (Eds). The Neuropsychology of Childhood Epilepsy. New York: Plenum Press, 2001: 229–244.Google Scholar
15. Commision for the Control of Epilepsy and its Consequences. Economic cost of epilepsy. In: Plan for nationwide action on epilepsy, vol. IV, DHEW Publication no. 78-279. Washington, DC: NIH 1978:117–148.Google Scholar
16. Huttenlocher, PR. Synaptic density in human frontal cortex. Developmental changes and effects of aging. Brain Res 1969;163:195–205.Google Scholar
17. Berg, AT, Shinnar, S. The risk of recurrence following a first unprovoked seizure: a quantitative review. Neurology 1991;41:965–972.Google Scholar
18. Vargha-Khadem, F, Isaacs, EB, Papaleloudi, H, Polkney, CE, Wilson, J. Development of language in six hemispherectomized patients. Brain 1991; 144:473–495.Google Scholar
19. De Silva, M, MacArdle, B, McGowan, M, et al. Randomized comparative monotherapy trial of phenobarbitone, phenytoin, carbamazepine, or sodium valproate for newly diagnosed childhood epilepsy. Lancet 1996;347:709–713.CrossRefGoogle ScholarPubMed
20. Kolb, B, Nonneman, AJ. Sparing of function in rats with early prefrontal cortex lesions. Brain Res 1978;151:135–148.CrossRefGoogle ScholarPubMed
21. Aldenkamp, AP, Alpherts, WCJ, Dekker, MJA, Overweg, J. Neuropsychological aspects of learning disabilities in epilepsy. Epilepsia 1990; 31 (suppl 4):S9–S20.Google Scholar
22. Goldman-Rakic, PS. Development and plasticity in primate frontal association cortex. In: Schmidt, FO. (Ed). Organization of the Cerebral Cortex. Cambridge, Mass.: MIT Press, 1981: 69–97.Google Scholar
23. Huttenlocher, PR, De Courten, C, Garey, LJ, van der Loos, H. Synaptogenesis in human visual cortex- evidence for synapse elimination during normal development. Neurosci Lett 1982;33:247–252.Google Scholar
24. Lassonde, M, Sauerwein, H, Geoffroy, G, Décarie, M. Effects of early and late transection of the corpus callosum in children. Brain 1986;109: 953–967.Google Scholar
25. Changeux, JP. L’Homme Neuronal. Paris: Fayard 1983.Google Scholar
26. Cellerino, A, Maffei, L. The action of neurotrophins in the development and plasticity of the visual cortex. Prog Neurobiol 1996;49:53–61.Google Scholar
27. Lassonde, M, Sauerwein, H, Chicoine, AJ, Geoffroy, G. Absence of disconnection syndrome in callosal agenesis and early callosotomy: brain reorganization or lack of structural specificity during ontology? Neuropsychologia 1991; 29:481–495.Google Scholar
28. Hartunian, NS, Smart, CN, Thompson, MS. The incidence and economic costs of cancer, motor vehicle injuries, coronary heart disease, and stroke: a comparative analysis. Am J Public Health 1980;70:1249–1260.CrossRefGoogle ScholarPubMed
29. Rutter, M, Graham, P, Yule, W. A neuropsychiatric study in childhood clinics. Clinics in Developmental Medicine, London: SIMP with Heinemann 1990;35–36.Google Scholar
30. Yule, W. Education achievement. In: Kulig, BM, Meinardi, H, Stores, G (Eds). Epilepsy and Behaviour. Lisse/Berwyn: Swets & Zeitlinger, 1980: 162–168.Google Scholar
31. Seidenberg, M, Beck, N, Geisser, M, et al. Academic achievement of children with epilepsy. J Epilepsy 1986;1:23–30.CrossRefGoogle Scholar
32. Kalviainen, R, Aikia, M, Saukkonen, AM, Mervaala, E, Riekkinen, P. Vigabatrin vs carbamazepine monotherapy in patients with newly diagnosed epilepsy. Arch Neurol 1995;52:989–996.Google Scholar
33. Camfield, PR, Camfield, CS, Gordon, K, Dooley, J. If a first antiepileptic drug fails to control a child’s epilepsy, what are the chances of success with the next drug? J Pediatr 1997;131:821–824.Google Scholar
34. Banks, GK, Regan, KJ, Beran, RG. The prevalence and direct costs of epilepsy in Australia. In: Beran, RG, Pachlatko, C. (Eds). Cost of Epilepsy: Proceedings of the 20th International Epilepsy Congress. Baden Germany: Ciba-Geigy Verlag 1995: 39–48.Google Scholar
35. Chiron, C, Marchand, MC, Tran, A, et al. Stiripentol in severe myoclonic epilepsy in infancy: a randomised placebo-controlled syndrome-dedicated trial. STICLO study group. Lancet 2000;356:1638–1642.Google Scholar
36. Richens, A, Davidson, DLW, Cartlidge, NEF, Easter DJ on behalf of the Adult EPITEG Collaborative Group. A multicentre trial of sodium valproate and carbamazepine in adult-onset epilepsy. J Neurol Neurosurg Psychiatry 1994;57:682–687.Google Scholar
37. Verity, CM, Hosking, G, Easter, DJ on behalf of The Pediatric EPITEG Collaborative Group. A multicentre comparative trial of sodium valproate and carbamazepine in pediatric epilepsy. Dev Med Child Neurol 1995;37:97–108.Google Scholar
38. Vickrey, BG, Hays, RD, Engel, J Jr, et al. Outcome assessment for epilepsy surgery: the impact of measuring health-related quality of life. Ann Neurol 1995;37:158–166.Google Scholar
39. Wirrell, E, Camfield, CS, Camfield, PR, et al. Long-term psychosocial outcome in typical absence epilepsy: sometimes a wolf in sheep’s clothing. Arch Pediatr Adol Med 1997;151:152–158.CrossRefGoogle Scholar
40. Hauser, WA, Annegers, JF, Kurland, LT. Prevalence of epilepsy in Rochester, Minnesota: 1940-1980. Epilepsia 1991;32:429–445.Google Scholar
41. Wiebe, S, Gafni, A, Blume, WT, Girvin, JP. An Economic Evaluation of Surgery for Temporal Lobe Epilepsy. J Epilepsy 1995;8:227–235.Google Scholar
42. Seidenberg, M. Academic achievement and school performance of children with epilepsy. In: Hermann, BP, Seidenberg, M (Eds.). Childhood Epilepsies: Neuropsychological, Psychosocial and Intervention Aspects. New York: John Wiley & Sons 1989;105–118.Google Scholar
43. Changeux, JP, Danchin, A. Selective stabilization of developing synapses as a mechanism for the specification of neuronal networks. Nature 1976;264:705–721.CrossRefGoogle ScholarPubMed
44. Roger, J, Bureau, M, Dravet, C, et al. Epileptic Syndromes. London: John Libbey, 1992;75–88 and 189-200.Google Scholar
45. Commission on classification and terminology of the International League Against Epilepsy. Proposal for revised classification of epilepsies and epileptic syndromes. Epilepsia 1989;30:389–399.Google Scholar
46. Sillanpää, M. Social functioning and seizure status of young adults with onset of epilepsy in childhood. Acta Neurol Scand 1983; 96:1–81.Google Scholar
47. Shinnar, S, Berg, AT. Does antiepileptic medication alter the prognosis of childhood seizures and prevent the development of chronic epilepsy. Sem Pediatr Neurol 1994;1:111–117.Google Scholar
48. Pellock, JM. Tiagabine (gabitril) experience in children. Epilepsia 2001;42 (Suppl 3):49–51.Google Scholar
49. Dooley, JM, Gordon, K, Camfield, PR, et al. Discontinuation of anticonvulsant therapy in children free of seizures for 1 year. Neurology 1996;46:969–974.CrossRefGoogle ScholarPubMed
50. Hauser, WA, Rich, SS, Lee, JR, Annegers, JF, Anderson, VE. Risk of recurrence after two unprovoked seizures. N Engl J Med 1998;338:429–434.Google Scholar
51. Hermann, BP. Neuropsychological functioning and psychopathology in children with epilepsy. Epilepsia 1982;23:S45–S54.Google Scholar
52. Stores, G. School children with epilepsy at risk for learning and behavior problems. Dev Med Child Neurol 1978; 20, 502–508.Google Scholar
53. Mitchell, WG, Zhou, Y, Chavez, JM, Gusman, BL. Reaction time, attention, and impulsivity in epilepsy. Pediatr Neurol 1992; 8:19–24.Google Scholar
54. Keene, D, Ventureyra, EC. Epilepsy surgery for 5- to 18-year-old patients with medically refractory epilepsy--is it cost efficient? Childs Nerv Syst 1999;15:52–54.Google Scholar
55. Henriksen, O. Education and epilepsy: assessment and remediation. Epilepsia 1990;31(suppl 4):S21–S25.Google Scholar
56. Sturniolo, MG, Galletti, F. Idiopathic epilepsy and school achievement. Arch Dis Child 1994;70:424–428.Google Scholar
57. Jacoby, A, Buck, D, Baker, G, et al. Uptake and costs of care for epilepsy: findings from a U.K. regional study. Epilepsia 1998;39:776–786.Google Scholar
58. Luria, AR. The Working Brain. New York: Penguin Books 1973.Google Scholar
59. Milner, B. Disorders of learning and memory after temporal lobe lesions in man. Clin Neurosurg 1972;19:521–546.Google Scholar
60. Camfield, PR, Camfield, CS, Dooley, JM, et al. Epilepsy after a first unprovoked seizure in childhood. Neurology 1985;35:1657–1660.Google Scholar
61. Hernandez, MT, Sauerwein, HC, De Guise, E, et al. Neuropsychology of frontal lobe epilepsy in children. In: Jambaqué, I, Lassonde, M, Dulac, O (Eds.), The Neuropsychology of Childhood Epilepsy. New York: Plenum Press, 2001: 103–111.CrossRefGoogle Scholar
62. Camfield, CS, Camfield, PR, Gordon, KE, Dooley, JM, Smith, BS. Predicting the outcome of childhood epilepsy - a population based study yielding a simple scoring system. J Pediatr 1993;122:861–868.Google Scholar
63. Wirrell, EC, Camfield, CS, Camfield, PR, Gordon, K, Dooley, J. Long-term prognosis of typical childhood absence epilepsy. Neurology 1996:47:912–918.Google Scholar
64. Hardus, P, Verduin, WM, Engelsman, M, et al. Visual field loss associated with vigabatrin: quantification and relation to dosage. Epilepsia 2001;42:262–267.Google Scholar
65. Wiebe, S, Blume, WT, Girvin, JP, Eliasziw, M. A randomized, controlled trial of surgery for temporal-lobe epilepsy. N Engl J Med 2001; 345:311–318.Google Scholar
66. Braathen, G, Anderson, T, Gylie, H, et al. Comparison between one and three years of treatment in uncomplicated childhood epilepsy: a prospective study. 1. Outcome in different seizure types. Epilepsia 1996:37;822–832.Google Scholar
67. Beran, RG, Banks, GK. Indirect costs of epilepsy in Australia. In: Beran, RG, Pachlatko, C. (Eds). Cost of Epilepsy: Proceedings of the 20th International Epilepsy Congress. Baden Germany: Ciba-Geigy Verlag 1995:49–54.Google Scholar
68. Cockerell, OC, Hart, YM, Sander, JWAS, Shorvon, SD. The cost of epilepsy in the United Kingdom: an estimation based on the results of two population-based studies. Epilepsy Res 1994;18:249–260.Google Scholar
69. Berg, AT, Shinnar, S. Relapse following discontinuation of antiepileptic drugs: meta-analysis. Neurology 1994;44:601–608.Google Scholar
70. Jalava, M, Sillanpaa, M, Camfield, CS, Camfield, PR. Social adjustment and competence 35 years after onset of childhood epilepsy: a prospective controlled study. Epilepsia 1997;38:708–715.CrossRefGoogle ScholarPubMed
71. Camfield, PR, Camfield, CS. Antiepileptic drug therapy: When is epilepsy truly intractable? Epilepsia 1996;37 (suppl 2):S60–S65.Google Scholar
72. Begley, CE, Famulari, M, Annegers, JF, et al. The cost of epilepsy in the United States: an estimate from population-based clinical and survey data. Epilepsia 2000;41:342–351.Google Scholar
73. Kwan, P, Brodie, MJ. Early identification of refractory epilepsy. N Engl J Med 2000;342:314–319.CrossRefGoogle ScholarPubMed
74. Masur, DM, Shinnar, S. The neuropsychology of childhood seizure disorders. In: Segalowitz, SJ , Rapin, I. (Eds.). Handbook of Neuropsychology, Vol 7: Child Neuropsychology. Amsterdam: Elsevier, 1992;457–470.Google Scholar
75. Camfield, C, Camfield, P, Smith, B, Gordon, K, Dooley, J. Biologic factors as predictors of social outcome of epilepsy in intellectually normal children: a population-based study. J Pediatr 1993;122:869–873.Google Scholar
76. Vermeulen, J, Kortstee, SWAT, Alpherts, WCJ, Aldenkamp, AP. Cognitive`performance in learning disabled children with and without epilepsy. Seizure 1994;3:13–21.Google Scholar
77. Van Donselaar, CA, Geerts, AT, Meulstee, J, Habbema, JDF, Staal, A. Reliability of the diagnosis of a first seizure. Neurology 1989;29:267–271.Google Scholar
78. Singh, R, Scheffer, IE, Crossland, K, Berkovic, SF. Generalized epilepsy with febrile seizures plus: a common childhood-onset genetic epilepsy syndrome. Ann Neurol 1999; 45: 75–81.Google Scholar
79. Murray, CJ, Lopez, AD, Jamison, DT. The global burden of disease in 1990: summary results, sensitivity analysis and future directions. Bull World Health Organ 1994; 72: 495–509.Google Scholar
80. Roy, H, Lussier, F, Lortie, A, Lassonde, M. Cognitive consequences of status epilepticus in the young child. World Association for Infant Mental Health, 7th International Congress, Montreal 2000.Google Scholar
81. Sauerwein, HC, Lassonde, M, Revol, O, et al. Neuropsychological and psychosocial consequences of corpus callosotomy. In: Jambaqué, I, Lassonde, M, Dulac, O (Eds). The Neuropsychology of Childhood Epilepsy. New York: Plenum Press, 2001: 245–256.Google Scholar
82. Gadian, DG, Isaacs, EB, Cross, JH, et al. Lateralization of brain function in childhood revealed by magnetic resonance spectroscopy. Neurology 1996;46:974–977.Google Scholar
83. Bourgeois, BF, Presnky, AL, Palkes, HS, Talent, BK, Busch, SG. Intelligence in epilepsy: a prospective study in children. Ann Neurol 1983;14: 438–444.Google Scholar
84. Metz-Lutz, ML, De Saint Martin, A, Massa, R, Hirsch, E. Transitory cognitive disorders and learning impairment. In: Jambaqué, I, Lassonde, M, Dulac, O (Eds), The Neuropsychology of Childhood Epilepsy, Plenum Press: New York. 2001, 159–169.Google Scholar
85. Shorvon, SD. The lack of funds for clinical epilepsy research in the UK. J R Coll Physicians Lond 1991;25:31–32.Google Scholar
86. Murray, MI, Halpern, MT, Leppik, IE. Cost of refractory epilepsy in adults in the USA. Epilepsy Res 1996;23:139–148.Google Scholar
87. Rutter, M, Graham, P, Yule, W. A Neuropsychiatric Study in Childhood. Philadelphia: J.B. Lippincott 1970.Google Scholar
88. Hoare, P. The development of psychiatric disorder among schoolchildren with epilepsy. Dev Med Child Neurol 1984; 26:3–13.CrossRefGoogle ScholarPubMed
89. Gross, CP, Anderson, GF, Powe, NR. The relation between funding by the National Institutes of Health and the burden of disease. N Engl J Med 1999;340:1881–1887.Google Scholar
90. Adelman, SM. The National Survey of Stroke. Economic impact. Stroke 1981;12:169–187.Google Scholar
91. Holdsworth, L, Whitmore, K. A study of children with epilepsy attending ordinary schools, their seizure patterns, progress and behaviour in school. Dev Med Child Neurol 1974;16:746–758.CrossRefGoogle ScholarPubMed
92. Milner, B. Interhemispheric differences in the localization of psychological processes in man. BMJ 1971; 27:272–277.Google Scholar
93. Bourgeois, BF. Antiepileptic drugs, learning, and behaviour in childhood epilepsy. Epilepsia 1998;39:91–92.Google Scholar