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Forskning

Vitenskapelige artikler og andre publikasjoner

Forfattere med tilknytning til Frambu er merket med uthevet skrift


2016



Susanne Schmidt, Heidi E. Nag, Bente S. Hunn, Gunnar Houge, Lise B. Hoxmark. A structured assessment of motor function and behavior in patients with Kleefstra syndrome. European Journal of Medical Genetics Volume 59, Issue 4, April 2016, Pages 240–248. doi:10.1016/j.ejmg.2016.01.004

Fjelnset, K., Owren, S. (2016). Er støttegrupper støttende? Observerende barn og fagpersoners vurderinger. Hovedoppgave i Psykologi, Psykologisk institutt, UIO. 2016.

Hughes. M. (2016).  Adjustment in siblings of children with chronic health conditions:  Associations with parent depression, anxiety, and stress. Hovedoppgave i Psykologi, Psykologisk institutt, UIO. 2016

Vatne, T.M., Fjermestad, K.W., Haukeland, Y.B & Mossige, S. (2016). The development of a joint parent-child intervention for siblings of children with chronic disorders. In prep.

Haukeland, Y.B., Vatne, T.M, Fjermestad, K.W., Mossige, S. (2016). Parent-child communication about emotional challenges experienced by siblings of children with chronic health conditions. In prep.


2015


Vatne, T. M., Helmen, I. Ø., Bahr, D., Kanavin, Ø., & Nyhus, L. "She Came out of mum’s Tummy the Wrong way” (Mis) Conceptions Among Siblings of Children with Rare Disorders. Journal of genetic counseling, 24 (2), 247-258. DOI: 10.1007/s10897-014-9757-9

Haukeland, Y. B., Fjermestad, K. W., Mossige, S., & Vatne, T. MEmotional Experiences Among Siblings of Children With Rare Disorders. Journal of pediatric psychology 40 (7), 712-720. doi: 10.1093/jpepsy/jsv022.

Bjaastad JF, Haugland BS, Fjermestad KW, Torsheim T, Havik OE, Heiervang ER, Öst LG. Competence and Adherence Scale for Cognitive Behavioral Therapy (CAS-CBT) for Anxiety Disorders in Youth: Psychometric Properties. Psychol Assess 2015 Oct 12. Epub 2015 okt 12. PMID: 26460894.

Fjermestad KW, Lerner MD, McLeod BD, Wergeland GJ, Heiervang ER, Silverman WK, Öst LG, De Los Reyes A, Havik OE, Haugland BS.Therapist-youth agreement on alliance change predicts long-term outcome in CBT for anxiety disorders.J Child Psychol Psychiatry 2015 Dec 9. Epub 2015 des 9. PMID: 26647901

Wergeland GJ, Fjermestad KW, Marin CE, Haugland BS, Silverman WK, Öst LG, Havik OE, Heiervang ER. Predictors of dropout from community clinic child CBT for anxiety disorders.J Anxiety Disord 2015 Apr;31():1-10. Epub 2015 jan 22. PMID: 25637909

Nordstrøm M,
Paus B, Andersen F, Kolset S. Dietary aspects related to health and obesity in Williams syndrome, Down syndrome, and Prader–Willi syndrome. Food Nutr Res. 2015; 59: 10.

Stokke S, Fjermestad KW, Bahr D. Utdanning, arbeid og helse blantmenn med Klinifelters syndrom og andre mannlige kjønnskromosomavvikSpesialpedagogikk, 2015, 2, 39-47
 
Jensen TK, Fjermestad KW m.fl.Stressful life experiences and mental health problems among unaccompained asylumseeking childrenClin Child Psychology and Psychiatry, 2015, 20(1)106.116
 
Avlagt doktorgrad:
Marianne Nordstrøm.
Obesity, Lifestyle and Cardiovascular Risk in Down syndrome, Prader-Willi syndrome and Williams syndrome (disputerte september 2015)


2014

Vatne TM, Helmen IØ, Bahr D, Kanavin Ø, Nyhus L. "She came out of mum's tummy the wrong way". (Mis)conceptions among siblings of children with rare disorders. J Genet Couns 2015 Apr;24(2):247-58. Epub 2014 sep 6. PMID: 25190477

Jørgensen Anders Palmstrøm, Ueland Thor, Sode-Carlsen Rasmus, Schreiner Thomas, Rabben Kai Fredrik, Farholt Stense, Høybye Charlotte, Christiansen Jens Sandahl, Bollerslev Jens. Glucose homeostasis in adults with Prader-Willi syndrome during treatment with growth hormone: results from a 12-month prospective study. Growth Horm IGF Res 2014 Feb;24(1):16-21. Epub 2013 des 4. PMID: 24360789

Wergeland Gro Janne H, Fjermestad Krister W, Marin Carla E, Haugland Bente Storm-Mowatt, Bjaastad Jon Fauskanger, Oeding Kristin, Bjelland Ingvar, Silverman Wendy K, Ost Lars-Göran, Havik Odd E, Heiervang Einar R. An effectiveness study of individual vs. group cognitive behavioral therapy for anxiety disorders in youth. Behav Res Ther 2014 Jun;57():1-12. Epub 2014 mar 31. PMID: 24727078

Fjermestad, K. W., Vatne, T. M., & Gjone, H. Teaching adolescents with 22q11.2 deletion syndrome cognitive behavioral skills (In press). Advances in Mental Health and Intellectual Disabilities.

Jensen, T. K., Skårdalsmo, E. M. B., & Fjermestad, K. W. Development of mental health problems - a follow-up study of unaccompanied refugee minors. Child and Adolescent Psychiatry and Mental Health, 8-29. doi:10.1186/1753-2000-8-29

Wergeland, G. J. H., Fjermestad, K. W., Marin, C., Haugland, B. S. M., Bjaastad, J. Treatment for anxiety disorders in youth: An effectiveness study of individual versus group cognitive behavioral therapy. Behavior Research and Therapy, 57, 1-12.

 
2013


Fjermestad, K. W., Stokke, S., Wergeland, G. J. H, Anticih, S., Haugland, B. S. M, Havik, O. E., & Heiervang, E. R. (in press): Socio-emotional problems in boys with sex chromosome aneuploidies compared to a clinical sample. Children's Health Care.

Jensen, T. K., Fjermestad, K. W., Granly, L., & Wilhelmsen, J. (2013): Stressful life experiences and mental health problems among unaccompanied minor asylum seekers. Clinical Child Psychology and Psychiatry. published online 27 August 2013 DOI: 10.1177/1359104513499356

Jørgensen AP1, Ueland T, Sode-Carlsen R, Schreiner T, Rabben KF, Farholt S, Høybye C, Christiansen JS, Bollerslev: Two years of growth hormone treatment in adults with Prader-Willi syndrome do not improve the low BMD. J Clin Endocrinol Metab. 2013 Apr;98(4):E753-60. doi: 10.1210/jc.2012-3378. Epub 2013 Feb 22.

Jørgensen AP1, Ueland T2, Sode-Carlsen R3, Schreiner T4, Rabben KF5, Farholt S3, Høybye C6, Christiansen JS7, Bollerslev J:   Glucose homeostasis in adults with Prader-Willi syndrome during treatment with growth hormone: Results from a 12-month prospective study. 8. Growth Horm IGF Res. 2013 Dec 4. pii: S1096-6374(13)00108-1. doi: 10.1016/j.ghir.2013.11.002. [Epub ahead of print]

Nordstrøm M, Hansen BH, Paus B, Kolset SO: :Accelerometer-determined physical activity and walking capacity in persons  with Down syndrome, Williams syndrome and Prader–Willi syndrome. Research Developmental Disability 2013 Dec;34(12):4395-403.

Trae, G E-læringskurs for tjenesteytere. Norsk Tidsskrift for Ernæring 2013; 3: 34-35

Vatne T, Haug M,  Andersen, B: Malerier gir innblikk i vanskelige tema Kronikk i Utdanning, nr 5-2013

Nag, HE: Parents and researchers interested in SMS Prisms Newsletter (Artikkel om Frambu og Smith-Magenis syndrom)

Vatne, T. M, Finset, A., Ørnes, K., Holmstrøm, H.,  Småstuen, M. C. ; Ruland, C. M. (2013):
Effects of an interactive symptom communication tool for children with heart disease on patient-provider communication in outpatient care: Preliminary results . Journal of Communication In Healthcare,  6(2), 106-114

Haug, M: Søskenliv i familier med funksjonshemmede barn. Tidsskriftet Alle barn er barn, HBF nr 1/2013

Hummelvoll, G. & Antonsen, K.M.:Young Adults’ Experience of Living with Neurofibromatosis Type 1. Journal of Genetic Counseling, April 2013, vol 22 no 2 

2012


Wynn, Rolf, Hagen, Kari, Friborg, Oddgeir: Video- conferencing at a centre for rare disorders: user satisfaction and user participation, i Acta Paediatr 2012 Febr: 101 (2)

Floor, Karijn, Barøy, Tuva, Misceo, Doriana, Kanavin, Øivind J, Fannemel, Madeleine, Frengen, Eirik: A 1 MB de novo deletion within 11q13. 1q13.2 in a boy with mild intellectual disability and minor dysmorphic features. Eur J Med Genet 2012 Dec.

Giltvedt, Kaja, Sætrang, Tone, Tveiten, Sidsel: Interaction and knowledge sharing among psysiotherapists in community and specialist health services- a focus group study. Fysioterapeuten nr 11- 2012

2011


Sode-Carlsen Rasmus, Farholt Stense, Rabben Kai Fr, Bollerslev Jens, Schreiner Thomas, Jurik Anne Grethe, Christiansen Jens Sandahl, Höybye Charlotte: Growth hormone treatment in adults with Prader-Willi syndrome: the Scandinavian study. Endocrine 2012 Apr;41(2):191-9. Epub 2011 nov 12 PMID: 22081257 

Sode-Carlsen Rasmus, Farholt Stense, Rabben Kai Fr, Bollerslev Jens, Schreiner Thomas, Jurik Anne Grethe, Frystyk Jan, Christiansen Jens Sandahl, Höybye Charlotte: Growth hormone treatment for two years is safe and effective in adults with Prader-Willi syndrome.Growth Horm IGF Res 2011 Aug;21(4):185-90. Epub 2011 jun 12 PMID: 21664161

Wynn Rolf, Hagen Kari, Friborg Oddgeir: Videoconferencing at a centre for rare disorders: user satisfaction and user participation. Acta Paediatr 2012 Feb;101(2):e83-5. Epub 2011 sep 27 PMID: 21910750 

2010


Eva Elisabeth Næss, David Bahr and Claus H Gravholt: Health status in women with Turner syndrome - a questionnaire study on health status, education, work participation and aspects of sexual functioning. Clin Endocrinol (Oxf) 72(5):678-684 (2010), PMID 19769615

Marianne Lindmark,  Kaja Giltvedt, Kerstin Trygg og Svein O. Kolset; Næringsinntak hos barn med Prader-Willis syndrom. Food and nutrition Research volum 54, 2010.

Sode-Carlsen Rasmus, Farholt Stense, Rabben Kai Fr, Bollerslev Jens, Schreiner Thomas, Jurik Anne Grethe, Christiansen Jens Sandahl, Höybye Charlotte: Body composition, endocrine and metabolic profiles in adults with Prader-Willi syndrome. Growth Horm IGF Res 2010 Jun;20(3):179-84. Epub 2010 mar 3 PMID: 20199883 

Sode-Carlsen Rasmus, Farholt Stense, Rabben Kai Fr, Bollerslev Jens, Schreiner Thomas, Jurik Anne Grethe, Christiansen Jens Sandahl, Höybye Charlotte: One year of growth hormone treatment in adults with Prader-Willi syndrome improves body composition: results from a randomized, placebo-controlled study. J Clin Endocrinol Metab 2010 Nov;95(11):4943-50. Epub 2010 aug 11 PMID: 20702523

Psykolog Grete Hummelvoll: Fastlegen og sjeldne genetiske tilstander − hva mener unge pasienter med nevrofibromatose?, publisert i tidsskriftet Utposten høsten 2010. Temaet ble også omtalt i tidsskriftets lederartikkel i samme nummer.

2009


Sode-Carlsen Rasmus, Farholt Stense, Rabben Kai Fr, Bollerslev Jens, Sandahl Christiansen Jens, Höybye Charlotte:Assessment of physical function in adults with Prader-Willi syndrome. Disabil Rehabil 2009;31(21):1780-4. PMID: 19479512

2008


Jørgen Diderichsen, Frambu og Liv Berit Augestad og Per Fosse, Tambartun kompetansesenter: Symptomatisk behandling av pasienter med barndomsformer av Nevronal Ceroid Lipofuscinose (NCL). Tidsskrift for Norsk Psykologforening nr 1-2008.  

Tverrfaglig artikkelsamling om ataxia teleangiectasia. Artikkelsamlingen bygger på litteratur og erfaringsmateriale og er utarbeidet av fagpersoner fra habiliteringstjenesten i Hedmark, barneavdelingen ved Kristiansund sykehus, Sentralsjukehuset i Hedmark, barneklinikken på Rikshospitalet, Huseby kompetansesenter og Frambu. Artikkelsamlingen ble ferdigstilt i 2008.

2007


Klinisk ernæringsfysiolog Marianne Lindmark: Ernæringsbehandling ved Prader-Willis syndrom i Norsk tidsskrift for ernæring nr. 4–2007.



 

Publisert: 14.03.2013