Om registeret

​Om NorCP

Cerebral parese (CP) skyldes en skade i den umodne hjerne og rammer først og fremst motorikk. CP er den hyppigste årsak til varige motoriske funksjonsvansker hos barn, samtidig som mange også opplever utfordringer knyttet til bl.a. syn, hørsel, kognisjon, kommunikasjon og epilepsi. Selve hjerneskaden kan ikke kureres og personer med CP vil ha varierende grad av utfordringer gjennom hele livet. Oppfølging av personer med CP går ut på å kartlegge styrker og svakheter for å tilrettelegge for optimal funksjon med mål om selvstendighet, deltagelse og best mulig livskvalitet i et livsløpsperspektiv. Forekomsten av CP i Norge er ca. 2 per 1000 levendefødte.

Norsk kvalitets- og oppfølgingsregister for cerebral parese (NorCP) er et resultat av mange års nært samarbeid mellom Cerebral pareseregisteret i Norge (CPRN) og Cerebral parese oppfølgingsprogrammet (CPOP), som i 2020 ble slått sammen til et felles register. NorCP jobber aktivt med å innføre standardiserte verktøy for diagnostisering og kartlegging av funksjon hos barn og unge med CP i Norge, og å legge til rette for kunnskapsbaserte tiltak. En overordnet målsetting for NorCP er likeverdige tjenester til personer med CP uavhengig av bosted.

CPRN ble opprettet på initiativ fra en gruppe forskere og klinikere ved NTNU, Medisinsk fødselsregister og Sykehuset i Vestfold. Bakgrunnen var at det ikke fantes noen tidligere nasjonale oversikter over forekomst og alvorlighetsgrad av CP blant barn i Norge. Til tross for mangeårig forskning har man fortsatt begrenset kunnskap om årsaker og risikofaktorer for CP. Registeret ble godkjent som nasjonalt medisinsk kvalitetsregister i 2006.

CPOP ble etablert som et systematisk motorisk oppfølgingsprogram først i Helse-Sør Øst i 2006 og deretter i hele Norge i 2010 etter modell fra CP Uppföljningsprogram for cerebral pares (CPUP) i Sverige som ble etablert i 1994. Alle barn med CP i Norge tilbys oppfølging i henhold til en standardisert protokoll avhengig av alder og funksjonsnivå.

NorCP eies av Sykehuset i Vestfold, men har også en enhet ved Oslo universitetssykehus. ​​

Sykehuset i Vestfold

Leder:

Guro L. Andersen, PhD
Seksjonsoverlege
Tlf.: 33 30 82 59

Registeransvarlig

Sandra Julsen Hollung, MSc, PhD
Helseinformatiker/forsker
Tlf.: 915 76 563

E-post: norcp@siv.no​ 

Postadresse:
Sykehuset i Vestfold
NorCP
PB 2168
3103 Tønsberg

Oslo universitetssykehus

Leder for kompetanseutvikling

Gunvor Lilleholt Klevberg, PhD
Ergoterapeut
Tlf: 23 02 69 84

Nasjonal koordinator

Nina Kløve, MSc
Spesialist i fysioterapi for barn og unge 
Tlf: 23 02 69 85

Seniorforsker

Reidun Jahnsen, PhD
Fysioterapeut
Tlf: 23 02 69 86

E-post: norcp@ous-hf.no

Postadresse​

Oslo universitetssykehus
Barneavdeling for nevrofag
Norsk kvalitets- og oppfølgingsregister for cerebral parese
Ullevål Sykehus, Bygg 31B
Postboks 4956 Nydalen
0424 Oslo​

Kurs og kompetanseutvikling

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Publikasjoner

Publikasjoner i internasjonale tidsskrift med fagfelleevaluering:

2023:

• ​​Carlsen H, Vik T, Andersen GL, Stangenes K, Bjellmo S, Westvik-Johari K, Hollung SJ (2023). Cerebral palsy in children born after assisted reproductive technology in Norway: Risk, prevalence, and clinical characteristics. Acta Obstet Gynecol Scand. doi:10.1111/aogs.14663.
  
• Weyde KVF, Winterton A, Surén P, Andersen GL, Vik T, Biele G, Knutsen HK, Thomsen C, Meltzer HM, Skogheim TS, Engel SM, Aase H, Villanger GD (2023). Association between gestational levels of toxic metals and essential elements and cerebral palsy in children. Front. Neurol. 14:1124943. doi: 10.3389/fneur.2023.1124943.
  
• Vinje S, Terjesen T, Kibsgård, T (2023). Scoliosis in children with severe cerebral palsy: a population-based study of 206 children at GMFCS levels III–V. Eur Spine J. doi: 10.1007/s00586-023-07868-1.
  
• Garne E, Goldsmith S, Barisic I, Braz P, Dakovic I, Gibson C, Hansen M, Hoei-Hansen CE, Hollung SJ, Klungsøyr K, Smithers-Sheedy H, Virella D, Badawi N, Watson L, McIntyre S (2023). Severe Congenital Heart Defects and Cerebral palsy. J Pediatr. Jul 18:113617. doi: 10.1016/j.jpeds.2023.113617.
  
• Pudig L, Delobel-Ayoub M, Horridge K, Gergeli AT, Sellier E, Ehlinger V, Hollody K, Virella D, Vik T, Arnaud C (2023). Classification of events contributing to postneonatal cerebral palsy: Development, reliability, and recommendations for use. Dev Med Child Neurol. Jul 24. doi: 10.1111/dmcn.15710.
  
• Mynarek M, Vik T, Andersen GL, Brigtsen AK, Hollung SJ, Larose TL, Lydersen S, Olsen LC, Strøm MS, Afset JE (2023). Mortality and neurodevelopmental outcome after invasive group B streptococcal infection in infants. Dev Med Child Neurol. Jun 12. doi: 10.1111/dmcn.15643.
  
• Moen RD, Øs​tensjø S (2023). Understanding the use and benefits of assistive devices among young children with cerebral palsy and their families in Norway: a cross-sectional population-based registry study. Disabil Rehabil Assist Technol. Apr 7:1-9. doi: 10.1080/17483107.2023.2198563.​
• Stockman J, Eggertsdóttir G, Gaston M, Jeglinsky-Kankainen I, Hollung SJ, Nordbye-Nielsen K, von Rosen P, Alriksson-Smidt AI (2023). Ankle-foot orthoses among children with cerebral palsy: a cross-sectional population-based register study of 8,928 children living in Northern Europe. BMC Musculoskelet Disord 24, 443. doi:10.1186/s12891-023-06554-z.
  
• Lillehaug HA, Klevberg GL, Stadskleiv K (2023). Provision of augmentative and alternative communication interventions to Norwegian preschool children with cerebral palsy: are the right children receiving interventions? Augment Altern Commun. doi:10.1080/07434618.2023.2212068.
• Evensen TL, Vik T, Andersen GL, Bjellmo S, Hollung SJ (2023). Prevalence, birth, and clinical characteristics of dyskinetic cerebral palsy compared with spastic cerebral palsy subtypes: A Norwegian register-based study. Dev Med Child Neurol. 00: 1– 11. doi:10.1111/dmcn.15598.
• Friede P, Hollung SJ, Vik T, Andersen GL, Cameron DL, de Rodez SA, Haugen OH,  Lundervold T,  Nicholas J,  Stadskleiv K (2023). Norwegian paediatric habilitation centres judge their own competence on cerebral visual impairment as limited. Acta Paediatr. 00: 1– 7. doi:10.1111/apa.16778.
• Klevberg GL, Zucknick M, Jahnsen R, Eliasson A-C (2023). Development of Hand Use with and Without Intensive Training Among Children with Unilateral Cerebral Palsy in Scandinavia. Dev Neurorehabilit, 26:3, 163-171, doi:10.1080​/17518423.2023.2193256.​
  

2022:

• ​McIntyre S, Goldsmith S, Ehlinger V, Hollung SJ, Arnaud C, Smithers-Sheedy Hayley, McConnell K, Khandaker G, Himmelmann, K (2022). Global prevalence of cerebral palsy: A systematic analysis. Dev Med Child Neurol. 64(12): 1494– 1506. doi:10.1111/dmcn.15346.
• Larsen SM, Terjesen T, Jahnsen RB, Diseth TH, Ramstad K. (2023). Health-related quality of life in adolescents with cerebral palsy; a cross-sectional and longitudinal population-based study. Child Care Health Dev. 49( 2), 373– 381. doi:/10.1111/cch.13055.​
• Larsen SM, Eide TB, Brunborg C, Ramstad K (2022). Daytime contacts and general practitioner consultations, and pain as a reason for encounter in children with cerebral palsy; a Norwegian national registry linkage study. Scandinavian Journal of Primary Health Care. doi:10.1080/02813432.2022.2144992.
• Knudsen M, Stadskleiv K, O'Regan E, Alriksson-Schmidt A, Andersen GL, Hollung SJ, Korsfeldt Å, Ödman P (2022). The implementation of systematic monitoring of cognition in children with cerebral palsy in Sweden and Norway. Disabil Rehabil. 2022 Jul 6:1-10. doi: 10.1080/09638288.2022.2094477.
• Schiariti V and Hollung SJ (2022). The rights of children with disabilities during armed conflict. Dev Med Child Neurol, 64: 802-803. doi:10.1111/dmcn.15240.
• Larsen SM, Terjesen T, Jahnsen RB, Ramstad K (2022). Recurrent pain in adolescents with cerebral palsy: a longitudinal population-based study. Dev Med Child Neurol. 64(3):357-63. doi:10.1111/dmcn.15040.
• Tharaldsen G, Hollung SJ, Vik T, Andersen GL (2022). High occurrence of perinatal risk factors and more severe impairments in children with postneonatal cerebral palsy in Norway. Acta Paediatr. doi:10.1111/apa.16240 .​​

2021:

• Stadskleiv K, van Walsem MR, Andersen GL, Bergqvist L, Bøttcher L, Christensen K, Heyerdahl D, Hollung SJ, Høye H, Jahnsen R, Klevberg GL, Lindquist B, Passmark H, Rike P-O, Rodby-Bousquet E and Alriksson-Schmidt AI (2021). Systematic Monitoring of Cognition for Adults With Cerebral Palsy—The Rationale Behind the Development of the CPCog-Adult Follow-Up Protocol. Front. Neurol. 12:710440. doi:10.3389/fneur.2021.710440. 
• Kalleson R, Jahnsen R & Østensjø S (2021). Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment? Disabil Rehabil. doi:10.1080/09638288.2021.189460.
• Kalleson R, Jahnsen R & Østensjø S (2021). Comprehensiveness, Coordination and Continuity in Services Provided to Young Children with Cerebral Palsy and Their Families in Norway. Child Care in Practice. doi:10.1080/13575279.2021.1898934.
• Hägglund G, Hollung SJ, Ahonen M, Andersen GL, Eggertsdóttir G, Gaston MS, Jahnsen R, Jeglinsky-Kankainen I, Nordbye-Nielsen K, Tresoldi I, Alriksson-Schmidt AI (2021). Treatment of spasticity in children and adolescents with cerebral palsy in Northern Europe: a CP-North registry study. BMC Neurol 21, 276. doi:10.1186/s12883-021-02289-3.​​​
• Klevberg GL, Jahnsen R, Elkjær S, Zucknick M (2021). Hand use development in children with unilateral cerebral palsy​. Dev Med Child Neurol. doi:10.1111/dmcn.14957.
• Bufteac GE, Jahnsen, R, Spinei L, Andersen GL. Risk Factor​s for Cerebral Palsy in Moldova​. Medicina (2021) 57, 540. doi:10.3390/medicina57060540.
• Hollung SJ, Vik T, Andersen GL. The Challenge of Identifying Causal Pathways Leading to Cerebral Palsy. Pediatrics Mar (2021). 147 (3) e2020033720. doi:10.1542/peds.2020-033720.
• Goldsmith S, McIntyre S, Scott H, Himmelmann K, Smithers‐Sheedy H, Andersen GL, Blair E, Badawi N, Garne E and the Comprehensive CA‐CP Study Group. Congenital anomalies in children with postneonatally acquired cerebral palsy: an international data linkage study. Dev Med Child Neurol (2021). 63: 421-428. doi:10.1111/dmcn.14805.
• Hollung SJ, Hägglund G, Gaston MS, Seid AK, Lydersen S, Alriksson‐Schmidt AI, Andersen GL. Point prevalence and motor function of children and adolescents with cerebral palsy in Scandinavia and Scotland: a CP‐North study. Dev Med Child Neurol (2021). doi:10.1111/dmcn.14764.
• Larsen SM, Ramstad K, Terjesen T (2021). Hip pain in adolescents with cerebral palsy: a population-based longitudinal study. Devl Med Child Neurol. 63(5):601-7. doi:10.1111/dmcn.14782.​
  

2020:

• Alriksson-Schmidt AI, Jeglinsky I, Jonsdottir G, Kedir Seid A, Klevberg G, Buschmann E, Jahnsen R. Living life with cerebral palsy? A description of the social safety nets for individuals with cerebral palsy in the Nordic countries. Scand J Public Health (2020) Dec 15:1403494820974564. doi:10.1177/1403494820974564.
• Bjellmo S, Andersen GL, Hjelle S, Klungsøyr K, Krebs L, Lydersen S, Romundstad PR, Vik T. Does caesarean delivery in the first pregnancy increase the risk for adverse outcome in the second? A registry-based cohort study on first and second singleton births in Norway. BMJ Open (2020). 10:e037717. doi:10.1136/bmjopen-2020-037717.
• Fosdahl MA, Jahnsen R, Pripp AH, Holm I. Change in popliteal angle and hamstrings spasticity during childhood in ambulant children with spastic bilateral cerebral palsy. A register-based cohort study. BMC Pediatrics (2020). 20(1), 11. doi:10.1186/s12887-019-1891-y.
• Goldsmith S, Mcintyre S, Andersen GL, Gibson C, Himmelmann K, Blair E, Badawi N, Smithers‐Sheedy H, Garne E and the Comprehensive CA‐CP Study Group. Congenital anomalies in children with pre‐ or perinatally acquired cerebral palsy: an international data linkage study. Dev Med Child Neurol (2020). doi:10.1111/dmcn.14602.
• Himmelmann K, Påhlman M, Andersen GL, Vik T, Virella D, Horridge K, Neubauer D, Arnaud C, Rackauskaite G, de la Cruz J. Access to Intrathecal Baclofen Treatment for Children with Cerebral Palsy in European Countries: An SCPE Survey Reveals Important Differences. Neuropediatrics (2020) Apr;51(2):129-134. doi:10.1055/s-0040-1701659.
• Horber V, Sellier E, Horridge K, Rackauskaite G, Andersen GL, Virella D, Ortibus E, Dakovic I, Hensey O, Radsel A, Papavasiliou A, Cruz De la J, Arnaud C, Krägeloh-Mann I, Himmelmann K. The Origin of the Cerebral Palsies: Contribution of Population-Based Neuroimaging Data. Neuropediatrics (2020) Apr;51(2):113-119. doi:10.1055/s-0039-3402007.
• Jahnsen R, Ramstad K, Myklebust G, Elkjaer S, Pripp AH, Klevberg GL. Independence of young people with cerebral palsy during transition to adulthood: a population-based 3 year follow-up study​. Journal of Transition Medicine (2020). 1 - open issue(1), 20190002. doi:10.1515/jtm-2019-0002.
• Mynarek, M, Bjellmo, S, Lydersen, S, Afset JE, Andersen GL, Vik T. Incidence of invasive Group B Streptococcal infection and the risk of infant death and cerebral palsy: a Norwegian Cohort Study. Pediatr Res (2020). doi:10.1038/s41390-020-1092-2. 
• Mynarek M, Bjellmo S, Lydersen S, Strand KM, Afset JE, Andersen GL, Vik T. Prelabor rupture of membranes and the association with cerebral palsy in term born children: a national registry-based cohort study. BMC Pregnancy Childbirth 20, 67 (2020). doi:10.1186/s12884-020-2751-3.
  

2019:

• Hollung SJ, Bakken IJ, Vik T, Lydersen S, Wiik R, Aaberg KM, Andersen GL. (2020), Comorbidities in cerebral palsy: a patient registry study. Dev Med Child Neurol, 62: 97-103. doi:10.1111/dmcn.14307.
• Alriksson-Schmidt AI, Ahonen M, Andersen GL, et al. CP-North: living life in the Nordic countries? A retrospective register research protocol on individuals with cerebral palsy and their parents living in Sweden, Norway, Denmark, Finland and Iceland. BMJ Open. 2019;9(10):e024438. doi:10.1136/bmjopen-2018-024438.
• Ross Raftemo AE, Mahendran A, Hollung SJ, Jahnsen RB, Lydersen S, Vik T, Andersen GL. Use of Botulinum Toxin A in Children With Cerebral Palsy.  Tidsskr Nor Laegeforen. 2019 Apr 24;139(8). doi: 10.4045/tidsskr.18.0554.
• Alriksson-Schmidt AI, Jeglinsky-Kankainen IFD, Jahnsen RB, Hollung SJ, Andersen GL, Hägglund, GV. Flaunting our assets. Making the most of the Nordic registry goldmine: Cerebral palsy as an example. Scandinavian Journal of Public Health, 48(1), 113–118. https://doi.org/10.1177/1403494819829338.
  
• Kalleson R, Jahnsen R, Østensjø S. Empowerment in families raising a child with cerebral palsy during early childhood: Associations with child, family, and service characteristics. Child Care Health Dev. 2020; 46: 19– 27. doi:10.1111/cch.12716.
  
• ​Fosdahl MA, Jahnsen R, Kvalheim K, Holm I. Effect of a Combined Stretching and Strength Training Program on Gait Function in Children with Cerebral Palsy, GMFCS Level I & II: A Randomized Controlled Trial. Medicina (Kaunas). 2019 Jun 6;55(6):250. doi: 10.3390/medicina55060250. 
• Fosdahl MA, Jahnsen R, Kvalheim K, Holm I. (2019). Stretching and Progressive Resistance Exercise in Children With Cerebral Palsy: A Randomized Controlled Trial​. Pediatr Phys Ther, 31(3), 264-271. doi:10.1097/pep.0000000000000616.

2018:

• Gincota E, Andersen GL, Vik T, Jahnsen R. Cerebral palsy in Moldova: subtypes, severity and associated impairments. BMC Pediatrics 2018; Volum 18.(1) s. 1-9. doi: 10.1186/s12887-018-1305-6.
• Hollung SJ, Vik T, Lydersen S, Bakken IJ, Andersen GL. Decreasing prevalence and severity of cerebral palsy in Norway among children born 1999 to 2010 concomitant with improvements in perinatal health. European Journal of Paediatric Neurology, Volume 22, Issue 5, 814-821. doi: 10.1016/j.ejpn.2018.05.001.
• Løhaugen GCC, Sundberg C, Beneventi H, Bakkan EE, Andersen GL, Walther G, Østgård HF, Vik T, Skranes JS. The Relationship between Adaptive Behavior and Cognitive Abilities (IQ) in Norwegian Children with Cerebral Palsy (CP): A Multi-Center Study. Int J Neurorehabilitation Eng 2018, Vol 5(4): 328. doi: 10.4172/2376-0281.1000328.
• Goldsmith S, Garcia Jalon G, Badawi N, et al.  Comprehensive investigation of congenital anomalies in cerebral palsy: protocol for a European-Australian population-based data linkage study (The Comprehensive CA-CP Study).  BMJ Open 2018;8:e022190. doi: 10.1136/bmjopen-2018-022190.
• Petersen TG, Liew Z, Andersen AN, Andersen GL, Andersen PK, Martinussen T, Olsen J, Rebordosa C, Tollånes MC, Uldall P, Wilcox AJ, Strandberg-Larsen K. Use of paracetamol, ibuprofen or aspirin in pregnancy and risk of cerebral palsy in the child. Int J Epidemiol. 2018 Feb 1;47(1):121-130. doi: 10.1093/ije/dyx235.
• Størvold GV, Jahnsen RB, Evensen KAI, Bratberg GH. Is more frequent physical therapy associated with increased gross motor improvement in children with cerebral palsy? A national prospective cohort study. Disabil Rehabil. 2020 May;42(10):1430-1438. doi: 10.1080/09638288.2018.1528635.
  
• Klevberg GL, Elvrum AG, Zucknick M, Elkjaer S, Østensjø S, Krumlinde-Sundholm L, Kjeken I, Jahnsen R. Development of bimanual performance in young children with cerebral palsy. Dev Med Child Neurol. 2018 May;60(5):490-497. doi: 10.1111/dmcn.13680.
• Størvold GV, Jahnsen RB, Evensen KAI, Romild UK, Bratberg GH. Factors Associated with Enhanced Gross Motor Progress in Children with Cerebral Palsy: A Register-Based Study. Phys Occup Ther Pediatr. 2018;38(5):548-561. doi: 10.1080/01942638.2018.1462288.
• Røe C, Kirkevold M, Andelic N, Soberg HL, Sveen U, Bautz-Holter E, Jahnsen R, van Walsem MR, Kildal Bragstad L, Gabrielsen Hjelle E, Klevberg G, Oretorp P, Habberstad A, Hagfors J, Væhle R, Engen G, Gutenbrunner C. The challenges of describing rehabilitation services: A discussion paper​. J Rehabil Med. 2018 Feb 13;50(2):151-158. doi: 10.2340/16501977-2299.

2017:

• Bjellmo S, Andersen GL, Hjelle S, Martinussen M, Moster D, Romundstad PR, Vik T. Is vaginal breech delivery associated with higher risk for perinatal death and cerebral palsy compared with vaginal cephalic birth? Registry-based cohort study in Norway. BMJ Open. 2017 May 4;7(4):e014979. doi: 10.1136/bmjopen-2016-014979.
• Brændvik SM, Roeleveld K, Andersen GL, Raftemo AER, Ramstad K, Majkic-Tajsic J, Lamvik T, Lund B, Follestad T, Vik T. The WE-Study: does botulinum toxin A make walking easier in children with cerebral palsy?: Study protocol for a randomized controlled trial. Trials. 2017 Feb 6;18(1):58. doi: 10.1186/s13063-016-1772-8.
• Stadskleiv K, Jahnsen R, Andersen GL, von Tetzchner S. Executive Functioning in Children Aged 6–18 Years with Cerebral Palsy. J Dev Phys Disabil (2017). doi:10.1007/s10882-017-9549-x.
• Stadskleiv K, Jahnsen R, Andersen GL, von Tetzchner S. Neuropsychological profiles of children with cerebral palsy. Developmental Neurorehabilitation 2017 s. 1-13.
• Hollung SJ, Vik T, Wiik R, Bakken IJ, Andersen GL. Completeness and correctness of cerebral palsy diagnoses in two health registers: implications for estimating prevalence. Dev Med Child Neurol. doi:10.1111/dmcn.13341.
  
• Klevberg GL, Østensjø S, Krumlinde-Sundholm L, Elkjær S, Jahnsen RB. Hand Function in a Population-Based Sample of Young Children with Unilateral or Bilateral Cerebral Palsy. Phys Occup Ther Pediatr. 2017 Oct 20;37(5):528-540. doi: 10.1080/01942638.2017.1280873.​
• Klevberg GL, Østensjø S, Elkjær S, Kjeken I, Jahnsen RB. Hand Function in Young Children with Cerebral Palsy: Current Practice and Parent-Reported Benefits. Phys Occup Ther Pediatr. 2017 May;37(2):222-237. doi: 10.3109/01942638.2016.1158221. 
• Pettersson K, Bjerke KM, Jahnsen R, Öhrvik J, Rodby-Bousquet E. Psychometric evaluation of the Scandinavian version of the caregiver priorities and child health index of life with disabilities. Disabil Rehabil. 2019 Jan;41(2):212-218. doi: 10.1080/09638288.2017.1378930.
• Ramstad K, Jahnsen RB, Terjesen T. Severe hip displacement reduces health-related quality of life in children with cerebral palsy. Acta Orthop. 2017;88(2):205-210. doi:10.1080/17453674.2016.1262685
• Terjesen T. To what extent can soft-tissue releases improve hip displacement in cerebral palsy?​. Acta Orthop. 2017;88(6):695-700. doi:10.1080/17453674.2017.1365471

2016:

• Elvrum, AK, Andersen GL, Himmelmann K, Beckung, E, Öhrvall, AM, Lydersen, S, Vik, T. Bimanual Fine Motor Function (BFMF) classification in children with cerebral palsy: Aspects of construct and content validity. Physical & Occupational Therapy in Pediatrics 2016; Volum 36.(1) s. 1-16.
• Strand KM, Andersen GL, Haavaldsen C, Vik T, Eskild A. Association of placental weight with cerebral palsy: population-based cohort study in Norway. BJOG. 2015 Dec 22. doi: 10.1111/1471-0528.13827. [Epub ahead of print]
• Sellier E, Platt MJ, Andersen GL, Krägeloh-Mann I, De La Cruz J, Cans C, on behalf of the SCPE. Decreasing prevalence in cerebral palsy: a multi-site European population-based study, 1980 to 2003. Dev Med Child Neurol. 2016 Jan;58(1):85-92. doi: 10.1111/dmcn.12865. Epub 2015 Aug 28.
• Myrhaug HT, Jahnsen R, Østensjø S. Family-centred practices in the provision of interventions and services in primary health care: A survey of parents of preschool children with cerebral palsy. J Child Health Care. 2016 Mar;20(1):109-19. doi: 10.1177/1367493514551312.​
• Ramstad K, Jahnsen R, Diseth TH. (2016) Associations between recurrent musculoskeletal pain and visits to the family doctor (GP) and specialist multi-professional team in 74 Norwegian youth with cerebral palsy. Child: Care, Health and Development, 42: 735– 741. doi: 10.1111/cch.12366.
• Ramstad K, Terjesen T. Hip pain is more frequent in severe hip displacement: a population-based study of 77 children with cerebral palsy. J Pediatr Orthop B. 2016 May;25(3):217-21. doi: 10.1097/BPB.0000000000000282.
• Strand KM, Dahlseng MO, Lydersen S, Rø TB, Finbråten AK, Jahnsen RB, Andersen GL, Vik T. Growth during infancy and early childhood in children with cerebral palsy: a population-based study. Dev Med Child Neurol. 2016 Sep;58(9):924-30. doi: 10.1111/dmcn.13098.

2015:

• Elvrum AK, Andersen GL, Himmelmann K, Beckung E, Ohrvall AM, Lydersen S, Vik T. Bimanual Fine Motor Function (BFMF) Classification in Children with Cerebral Palsy: Aspects of Construct and Content Validity. Phys Occup Ther Pediatr. 2015 Aug 19:1-16.
• Virella D, Pennington L, Andersen GL, Andrada MD, Greitane A, Himmelmann K, Prasauskiene A, Rackauskaite G, De La Cruz J, Colver A, On behalf of the SCPE. Classification systems of communication for use in epidemiological surveillance of children with cerebral palsy. Dev Med Child Neurol. 2015 Aug 14. doi: 10.1111/dcmn.12866. [Epub ahead of print].
• Lien E, Andersen GL, Bao Y, Gordish-Dressman H, Skranes JS, Blackman JA, Vik T. Genes determining the severity of cerebral palsy: the role of single nucleotide polymorphisms on the amount and structure of apolipoprotien E. Acta Paediatr. 2015 Jul;104(7):701-6. doi: 10.1111/apa. 12983.
• Stoknes M, Lien E, Andersen GL, Bao Y, Blackman JA, Lie RT, Vik T. Child apolipoprotein E gene variants and risk of cerebral palsy: Estimation from case-parent triads. Eur J Paediatr Neurol. 2015  May;19(3):286:91. doi: 10.1016/j.ejpn.2014.12.017.
• Finbråten AK, Syversen U, Skranes J, Andersen GL, Stevenson RD, Vik T. Bone mineral density and vitamin D status in ambulatory and non-ambulatory children with cerebral palsy. Osteoporos Int. 2015 Jan;26(1):141-50.
• Ramstad K, Loge JH, Jahnsen R, Diseth TH. Self-reported mental health in youth with cerebral palsy and associations to recurrent musculoskeletal pain. Disabil Rehabil. 2015;37(2):144-50. doi: 10.3109/09638288.2014.913703.

2014:

• Lien E, Andersen GL, Bao Y, Gordish-Dressman H, Skranes J, Blackman JA, Vik T. Gene sequences regulating the production of apoE and cerebral palsy of variable severity. Eur J Paediatr Neurol. 2014 Sept;18(5):591-6.
  
• Løhaugen GC, Beneventi H, Andersen GL, Sundberg C, Østegård HF, Bakkan E, Walther G, Vik T, Skranes J. Do children with cerebral palsy benefit from computerized working memory training? Study protocol for a randomized controlled trial. Trials. 2014 Jul 7;15:269.
  
• Dahlseng MO, Andersen GL, Irgens LM, Skranes J, Vik T. Risk of cerebral palsy in term-born singletons according to growth status at birth. Dev Med Child Neurol. 2014 Jan;56(1):53-8.
  Commentary: Day SM. Birth size and risk of cerebral palsy in term births. Dev Med Child Neurol. 2013 Oct 5. doi: 10.111/dmcn. 12293. Commentary: Day SM. Birth size and riskof cerebral palsy in term births. Dev Med Child Neurol. 2013 Oct 22. doi: 10.111/dmcn.12324.
  
• Tinderholt Myrhaug H, Østensjø S, Larun L, Odgaard-Jensen J, Jahnsen R. Intensive training of motor function and functional skills among young children with cerebral palsy: a systematic review and meta-analysis. BMC Pediatr. 2014 Dec 5;14:292. doi: 10.1186/s12887-014-0292-5.

2013:

• Pennington, L, Virella, D, Mjøen, TR, Andrada, MDG, Murray, J, Colver, A, Himmelmann, K, Rackauskaite, G, Greitane, A, Prasauskiene, A, Andersen, GL, De la Cruz, J. Development of The Viking Speech Scale to classify the speech of children with cerebral palsy. Journal of Research in Developmental Disabilities 2013; Volum 34.(10) s. 3202-3210.

• Surén P, Bakken IJ, Lie KK, Schjølberg S, Aase H, Reichborn-Kjennerud T, Magnus P, Øyen AS, Svendsen BK, Aaberg KM, Andersen GL, Stoltenberg C. Differences across counties in the registered prevalence of autism, ADHD, epilepsy and cerebral palsy in Norway. Tidsskr Nor Laegeforen. 2013 Oct 1;133(18):1929-34.

• Strand KM, Heimstad R, Iversen AC, Austgulen R, Lydersen S, Andersen GL, Irgens LM, Vik T. Mediators of the association between pre-eclampsia and cerebral palsy: a population based cohort study. BMJ. 2013 Jul 9;347:f4089. doi: 10.1136/bmj.f4089.

• Lien E, Andersen GL, Bao Y, Gordish-Dressman H, Skranes JS, Vik T, Blackman JA.  Apolipoprotein E polymorphisms and severity of cerebral palsy: a cross-sectional study in 255 children in Norway. Dev Med Child Neurol. 2013 Apr;55(4):372-7. doi: 10.1111/dmcn.12086.
  Commentary: O'Callaghen. Apolipoprotein E and the genetics of cerebral palsy-where to next? Dev Med Child Neurol. Dev Med Child Neurol. 2013 Apr;55(4):302-3. doi: 10.1111/dmcn.12074.

• von Tetzchner S, Verdel M, Barstad BG, Gravås EM, Jahnsen R, Krabbe S, Ramstad K, Schiørbeck H, Skjeldal OH, Tranheim RS, Bang B, Jensen B, Jensen H, Kildemoes L, Mottlau J, Rasmussen KV, Ytting H. The effect of interventions based on the programs of The Institutes for the Achievement of Human Potential and Family Hope Center. Dev Neurorehabil. 2013 Aug;16(4):217-29. doi: 10.3109/17518423.2012.739211.
  

2012:

• Stoknes M, Andersen GL, Dahlseng MO, Skranes J, Salvesen KÅ, Irgens LM, Kurinczuk JJ, Vik T. Cerebral palsy and neonatal death in term singletons born small for gestational age. Pediatrics. 2012 Dec; 130(6):e1629-35. doi: 10,1542/peds.2012-0152.
  
• Dahlseng MO, Andersen GL, DA Graca Andrada M, Arnaud C, Balu R, De La Cruz J, Folha T,  Himmelmann K, Horridge K, Júlíusson P, Påhlman M, Rackauskaite G, Sigurdardottir S, Uldall P, Vik T; on behalf of the Surveillance of Cerebral Palsy in Europe Network. Gastrostomy tube feeding of children with cerebral palsy: variation across six European countries. Dev Med Child Neurol. 2012 Jul 31.
  
• Elkamil AI, Andersen GL, Skranes J, Lamvik T, Vik T. Botulinum Neurotoxin treatment in children with cerebral palsy (CP): a population-based study in Norway. Euro J Paediatr Neurol. 2012 Feb 9.
  
• Stoknes M, Andersen GL,  Elkamil AI, Irgens LM, Skranes J, Salvesen KÅ, Vik T. The effects of multiple pre- and perinatal risk factors on the occurrence of cerebral palsy.  A Norwegian register based study. Eur J Paediatr Neurol. 2012 Jan; 16(1):56-63.
  
• Dahlseng MO, Finbråten AK, Júlíusson PB, Skranes J, Andersen G, Vik T. Feeding problems, growth and nutritional status in children with cerebral palsy. Acta Paediatr. 2012 Jan;101(1):92-8. 
• Ramstad K, Jahnsen R, Skjeldal OH, Diseth TH. Mental health, health related quality of life and recurrent musculoskeletal pain in children with cerebral palsy 8-18 years old. Disabil Rehabil. 2012;34(19):1589-95. doi: 10.3109/09638288.2012.656794.
  
• Ramstad K, Jahnsen R, Skjeldal OH, Diseth TH. Parent-reported participation in children with cerebral palsy: the contribution of recurrent musculoskeletal pain and child mental health problems. Dev Med Child Neurol. 2012 Sep;54(9):829-35. doi: 10.1111/j.1469-8749.2012.04341.x.
• Terjesen T. The natural history of hip development in cerebral palsy. Dev Med Child Neurol. 2012 Oct;54(10):951-7. doi: 10.1111/j.1469-8749.2012.04385.x.

2011:

• Andersen GL, Romundstad P, Cruz JD, Himmelmann K, Sellier E, Cans C, Kurinczuk JJ, Vik T. Cerebral palsy among children born moderately preterm or at moderately low birthweight between 1980 and 1998: a European register-based study. Dev Med Child Neurol. 2011 Oct;53(10):913-9.
  
• Elkamil AI, Andersen GL, Lamvik T, Skranes J, Hägglund G, Vik, T. Prevalence of hip dislocation in regions with and without a surveillance programme: A cross sectional study in Sweden and Norway. BMC Musculoskelt Disord. 2011 Dec 16;12:284.
  
• Elkamil AI, Andersen GL, Salvesen KÅ, Skranes J, Irgens LM, Vik T. Induction of labor and cerebral palsy: a population-based study in Norway. Acta Obstet Gynecol Scand. 2011 Jan;90(1):83-91.
• Ramstad K, Jahnsen R, Skjeldal OH, Diseth TH. Characteristics of recurrent musculoskeletal pain in children with cerebral palsy aged 8 to 18 years​. Dev Med Child Neurol. 2011 Nov;53(11):1013-8. doi: 10.1111/j.1469-8749.2011.04070.x.

2010:

• Sellier E et al. Trends in prevalence of cerebral palsy in children born with a birthweight of 2,500 g or over in Europe. Eur J Epidemiol. 2010 Sep;(9):635-42.
  
• Andersen Guro L et al. Prevalence of Speech Problems and the Use of Augmentative and Alternative Communication in Children with Cerebral Palsy: A Register-Based Study in Norway. Perspectives on Augmentative and Alternative Communication. April 2010 19:12-20.

2009:

• Andersen GL et al. Is breech presentation a risk factor for cerebral palsy? A Norwegian birth cohort study. Dev Med Child Neurol. 2009 Nov;51(11):860-5.
  
• Heinen F et al. The updated European Consensus 2009 on the use of Botulinum toxin for children with cerebral palsy. Eur J Paediatr Neurol. 2010 Jan;14(1):45-66. Epub 2009 Nov 14.

2008:

• Andersen G L et al. Cerebral palsy in Norway: Prevalence, subtypes and severity. Eur Jour Paed Neurol 2008 Jan;12(1): 4-13.

Bokkapitler:

• Habilitering av barn og unge tiltak for helsefremming og mestring
  Kapittel 10. Habiliteringsforløp for barn med cerebral parese: Randi Hoel og Guro L. Andersen
  Edith V. Lunde, Bjørn Lerdal, Leif Hugo Stubrud (red.)
  Universitetsforlaget | 1 utg. | 2011 | Bokmål | ISBN: 9788215019369
• Nevrologi og nevrokirurgi fra barn til voksen: undersøkelse - diagnose - behandling
  Kapittel 15. Cerebral Parese: Ånen Aarli, Guro Andersen, Reidun Jansen og Kristian Sommerfelt
  Leif Gjerstad, Eirik Helseth, Terje Rootwelt (red.)
  Vett og viten | 5. utg. | 2010 | Bokmål | ISBN: 9788241206863
• Cerebral parese: medisinsk informasjon
  Hva er cerebral parese? Hvem får cerebral parese?:  Guro L Andersen
  Atle Fretheim (red.)
  Serienummer 09:4 | 2009 |  ISBN 9788278416242
• Vik, Torstein (medforfatter).  The European Perinatal Health Report. Cerebral Palsy, SCPE network
  
  

Fagråd

• Solveig Bjellmo  spesialist gynekologi og obstetrikk/PhD-kandidat, Ålesund sjukehus
• Hanne Marit Bjørgaas, PhD, barnepsykiater, Helse Stavanger
• Marit Rekkedal Edvardsen, fysioterapeut, Akershus universitetssykehus
• Ann-Kristin Gunnes Elvrum, PhD, ergoterapeut, St. Olavs Hospital
• Gunnar Hägglund, ortoped/professor, Lunds universitet
• Andreas Knaus, ortoped, Oslo universitetssykehus
• Jasmina Majkic-Tajsic, barnelege, Universitetssykehuset Nord-Norge
• Kristine Stadskleiv, PhD, nevropsykolog, Oslo universitetssykehus
• Kristine Marie Stangenes, barnelege/PhD-kandidat, Medisinsk fødselsregister
• Gunfrid Vinje Størvold, fysioterapeut/PhD-kandidat, Sykehuset Levanger
• Torstein Vik, barnelege/professor, NTNU
• Randi Væhle, brukerrepresentant, CP-foreningen
  

Forskning

Det er en overordnet målsetning at NorCP-data skal benyttes til forskning som kan gi ny kunnskap om cerebral parese (CP).

I tillegg til egen forskning i regi av registeret​, skal data også være tilgjengelig for andre forskere, både nasjonalt og internasjonalt.

I dag forsker NorCP blant annet på forekomst, typer og alvorlighetsgrad av CP, årsaker og risikofaktorer for CP, samt behov for behandling og habiliteringstiltak for personer med CP. Denne forskningen skjer i nært samarbeid med NTNU i Trondheim, Medisinsk fødselsregister i Bergen; (som er en avdeling av Folkehelseinstituttet) og med Norsk nyfødtmedisinsk kvalitetsregister ved Oslo universitetssykehus, Rikshospitalet. I tillegg til de allerede nevnte samarbeidspartnerne vil denne forskningen skje i samarbeid med Høgskolen i Oslo og Bergen og internasjonalt spesielt med Universitetene i Lund, Sverige, og med Cerebral Palsy Alliance i Sydney, Australia .

Internasjonalt samarbeider NorCP med et europeisk nettverk for å studere forekomsten av CP i Europa (Surveillance of Cerebral Pasly in Europe - SCPE) og med CP-uppföljningsprogrammet (CPUP) som er det nasjonale kvalitetsregisteret for CP i Sverige.

All forskning vil følge de internasjonale forskningsetiske retningslinjene, hvilket blant annet innebærer at de må være godkjent av en regional komite for medisinsk forskningsetikk i Norge.

Forskningsresultatene blir presentert på nasjonale og internasjonale konferanser, og i nasjonale og internasjonale populærvitenskapelige og vitenskapelige tidsskrift (NorCP-publikasjoner).

NorCP har et felles fagråd som godkjenner alle forskningsprosjekt som ønsker å benytte data fra registrene. Søknad om tilgang til data ligger under «For forskere»

Årsrapporter

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Skje​maer, vedtekter og verktøy

​​​Protokoller​​​/samtykker​

Her kan m​an laste ned alle NorCP-skjemaer med unntak av følgende ung-skjemaer som har opphavsrett: SDQ© (foreldre og ungdom), PedsQL© (foreldre og ungdom) og Fatigue Severity Scale© (ungdom). Ta kontakt for kopi: norcp@siv.no​

Forløp og registreringstidspunkt

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Protokoller

Manualer

​​Sam​​tykker​​

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​Vedt​ekter

Klassifikasjonsverktøy

Communication Function Classification System (CFCS)

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Gross Motor Function Measure (GMFM)

Gross Motor Function Classification System (GMFCS)​

Klassifikasjonssystem for spise- og drikkefunksjon (EDACS)

Manual Ability Classification System (MACS)

Posture and​ Postural Ability Scale (PPAS)

Viking T​aleskala

Hjelpetekster i eReg

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Fagressurser og nyttige lenker

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For forskere

​Søknad om data fra Norsk kvalitets- og oppfølgingsregister for cerebral parese ​

NorCP variabeldokumen​​tasjon:​​

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