-
1
-
-
0029023563
-
Behavior in mucopolysaccharide disorders
-
COI: 1:STN:280:DyaK2Mzms1OqtA%3D%3D, PID: 7639557
-
Bax, M. C., & Colville, G. A. (1995). Behavior in mucopolysaccharide disorders. Archives of Disease in Childhood, 73, 77–81.
-
(1995)
Archives of Disease in Childhood
, vol.73
, pp. 77-81
-
-
Bax, M.C.1
Colville, G.A.2
-
2
-
-
33749987624
-
The mucopolysaccharidoses
-
Goldstein S, Reynolds CR, (eds), The Guilford Press, New York
-
Brown, M. B. (1999). The mucopolysaccharidoses. In S. Goldstein & C. R. Reynolds (Eds.), Handbook of neurodevelopmental and genetic disorders in children (pp. 317–336). New York: The Guilford Press.
-
(1999)
Handbook of neurodevelopmental and genetic disorders in children
, pp. 317-336
-
-
Brown, M.B.1
-
3
-
-
77951760170
-
Quality of life in rare genetic conditions: a systematic review of the literature
-
Cohen, J. S., & Biesecker, B. S. (2010). Quality of life in rare genetic conditions: a systematic review of the literature. American Journal of Medicine and Genetic A, 152A(5), 1136–1156.
-
(2010)
American Journal of Medicine and Genetic A
, vol.152A
, Issue.5
, pp. 1136-1156
-
-
Cohen, J.S.1
Biesecker, B.S.2
-
4
-
-
22344455083
-
Evaluating health-related quality-of-life studies in paediatric populations
-
DeCivita, M., Regier, D., Alamagir, A. H., Anis, A. H., Fitzgerald, M. J., & Marra, C. A. (2005). Evaluating health-related quality-of-life studies in paediatric populations. Pharmaco Economics, 23, 659–685.
-
(2005)
Pharmaco Economics
, vol.23
, pp. 659-685
-
-
DeCivita, M.1
Regier, D.2
Alamagir, A.H.3
Anis, A.H.4
Fitzgerald, M.J.5
Marra, C.A.6
-
5
-
-
85018089696
-
Treatment for Hunter syndrome approved. FDA Consumer
-
Food and Drug Administration. (2006). Treatment for Hunter syndrome approved. FDA Consumer, September-October 2006:4.
-
(2006)
September-October
, vol.2006
, pp. 4
-
-
-
6
-
-
0031744663
-
Identification of iduronate sulftatase gene alterations in 70 unrelated Hunter patients
-
COI: 1:STN:280:DyaK1czitFCqsg%3D%3D, PID: 9660053
-
Froissart, R., Maire, I., Millat, G., Cudry, S., Birot, A. M., Bonnett, V., Bouton, O., & Boson, D. (1998). Identification of iduronate sulftatase gene alterations in 70 unrelated Hunter patients. Clinical Genetics, 53, 362–368.
-
(1998)
Clinical Genetics
, vol.53
, pp. 362-368
-
-
Froissart, R.1
Maire, I.2
Millat, G.3
Cudry, S.4
Birot, A.M.5
Bonnett, V.6
Bouton, O.7
Boson, D.8
-
7
-
-
33947578019
-
Mucopolysaccharidosis type II: an update on mutation spectrum
-
Froissart, R., Da Silva, I. M., & Maire, I. (2007). Mucopolysaccharidosis type II: an update on mutation spectrum. Acta Pædactrica, 96, 71–77.
-
(2007)
Acta Pædactrica
, vol.96
, pp. 71-77
-
-
Froissart, R.1
Da Silva, I.M.2
Maire, I.3
-
8
-
-
61449246397
-
Pediatric chronic pain and health-related quality of life
-
PID: 19268235
-
Gold, J. I., Yetwin, A. K., Mahrer, N. E., Carson, M. C., Griffin, A. T., Palmer, S. N., & Joseph, M. H. (2009). Pediatric chronic pain and health-related quality of life. Journal of Pediatric Nursing, 24(2), 141–150.
-
(2009)
Journal of Pediatric Nursing
, vol.24
, Issue.2
, pp. 141-150
-
-
Gold, J.I.1
Yetwin, A.K.2
Mahrer, N.E.3
Carson, M.C.4
Griffin, A.T.5
Palmer, S.N.6
Joseph, M.H.7
-
9
-
-
34547601182
-
Health-related quality of life problems of children aged 8–11 years with a chronic disease
-
COI: 1:STN:280:DC%2BD2szptVCjtw%3D%3D, PID: 17608324
-
Grootenhuis, M. A., Koopman, H. M., Verrips, E. G. H., Vogels, A. G. C., & Last, B. F. (2007). Health-related quality of life problems of children aged 8–11 years with a chronic disease. Developmental Neurorehabilitation, 10, 27–33.
-
(2007)
Developmental Neurorehabilitation
, vol.10
, pp. 27-33
-
-
Grootenhuis, M.A.1
Koopman, H.M.2
Verrips, E.G.H.3
Vogels, A.G.C.4
Last, B.F.5
-
10
-
-
85018103458
-
Quality-of-life changes in MPS II patients receiving enzyme replacement therapy
-
Hale S., Merritt J. L., Scott C. R., Hahn S., Schubert P., Raff M. 2008. Quality-of-life changes in MPS II patients receiving enzyme replacement therapy. Poster presentation at Lysosomal Disease Network (WORLD) Symposium.
-
(2008)
Poster presentation at Lysosomal Disease Network (WORLD) Symposium
-
-
Hale, S.1
Merritt, J.L.2
Scott, C.R.3
Hahn, S.4
Schubert, P.5
Raff, M.6
-
11
-
-
38849176942
-
Recognition and diagnosis of mucopolysaccharidosis II (Hunter Syndrome)
-
Martin, R., Beck, M., Eng, C., Giugliani, R., Harmatz, P., & Muñoz, V. (2008). Recognition and diagnosis of mucopolysaccharidosis II (Hunter Syndrome). Pediatrics, 121, 377–386.
-
(2008)
Pediatrics
, vol.121
, pp. 377-386
-
-
Martin, R.1
Beck, M.2
Eng, C.3
Giugliani, R.4
Harmatz, P.5
Muñoz, V.6
-
12
-
-
0034058245
-
Social functioning in children with a chronic illness
-
COI: 1:STN:280:DC%2BD3c3ksVKltg%3D%3D, PID: 10784078
-
Meijer, S. A., Sinnema, G., Bijstra, J. O., Mellenbergh, G. J., & Wolters, W. H. G. (2000). Social functioning in children with a chronic illness. The Journal of Child Psychology and Psychiatry, 41, 309–317.
-
(2000)
The Journal of Child Psychology and Psychiatry
, vol.41
, pp. 309-317
-
-
Meijer, S.A.1
Sinnema, G.2
Bijstra, J.O.3
Mellenbergh, G.J.4
Wolters, W.H.G.5
-
13
-
-
84857061064
-
The role of enzyme replacement therapy in severe Hunter syndrome—an expert panel consensus
-
COI: 1:CAS:528:DC%2BC38XksVKluw%3D%3D, PID: 22037758
-
Muenzer, J., Bodamer, O., Burton, B., Clarke, L., Frenking, G. S., Giugliani, R., Jones, S., Rojas, M. V. M., Scarpa, M., Beck, M., & Harmatz, P. (2012). The role of enzyme replacement therapy in severe Hunter syndrome—an expert panel consensus. European Journal of Pediatrics, 171, 181–188.
-
(2012)
European Journal of Pediatrics
, vol.171
, pp. 181-188
-
-
Muenzer, J.1
Bodamer, O.2
Burton, B.3
Clarke, L.4
Frenking, G.S.5
Giugliani, R.6
Jones, S.7
Rojas, M.V.M.8
Scarpa, M.9
Beck, M.10
Harmatz, P.11
-
14
-
-
85018109322
-
MPS II (Hunter syndrome)
-
National MPS Society. (2013). MPS II (Hunter syndrome). Retrieved from: http://www.mpssociety.org/mps/mps-ii/.
-
(2013)
Retrieved from:
-
-
-
15
-
-
84901912289
-
MPS II: adaptive functioning of patients and impact on the family system
-
PID: 24190099
-
Needham, M. C., Packman, W., Rappoport, M., Quinn, N., Morgan, C., Cordova, M., Macias, S., & Packman, S. (2014). MPS II: adaptive functioning of patients and impact on the family system. Journal of Genetic Counseling, 23(3), 330–338. doi:10.1007/s10897–013–9665–4.
-
(2014)
Journal of Genetic Counseling
, vol.23
, Issue.3
, pp. 330-338
-
-
Needham, M.C.1
Packman, W.2
Rappoport, M.3
Quinn, N.4
Morgan, C.5
Cordova, M.6
Macias, S.7
Packman, S.8
-
16
-
-
84880029146
-
The impact of Hunter syndrome (mucopolyasccharidosis type II) on health-related quality of life
-
Raluy-Callado, M., Chen, W. H., Whiteman, D. A., Fang, J., & Wiklund, I. (2013). The impact of Hunter syndrome (mucopolyasccharidosis type II) on health-related quality of life. Orphanet Journal of Rare Diseases, 8, 1–10.
-
(2013)
Orphanet Journal of Rare Diseases
, vol.8
, pp. 1-10
-
-
Raluy-Callado, M.1
Chen, W.H.2
Whiteman, D.A.3
Fang, J.4
Wiklund, I.5
-
17
-
-
33947590635
-
A clinical study of 77 patients with mucopolysaccharidosis type II
-
Schwartz, I., Ribeiro, M. G., Mota, J. G., Toralles, M. B. P., Correia, P., & Horovitz, D. (2007). A clinical study of 77 patients with mucopolysaccharidosis type II. Acta Pædactrica, 96, 63–70.
-
(2007)
Acta Pædactrica
, vol.96
, pp. 63-70
-
-
Schwartz, I.1
Ribeiro, M.G.2
Mota, J.G.3
Toralles, M.B.P.4
Correia, P.5
Horovitz, D.6
-
19
-
-
85018104741
-
Psychosocial aspects of chronic illness. In P. T. Costa & G. R. VandenBos (Eds.), Psychological aspects of serious illness: Chronic conditions, fatal diseases
-
Taylor S. E., Aspinwall L. G. (1996). Psychosocial aspects of chronic illness. In P. T. Costa & G. R. VandenBos (Eds.), Psychological aspects of serious illness: Chronic conditions, fatal diseases, and clinical care: 7–60.
-
(1996)
Clinical care: 7–60
-
-
Taylor, S.E.1
Aspinwall, L.G.2
-
20
-
-
0035432179
-
The PedsQL™™ 4.0: reliability and validity of the pediatric quality of life inventory™ version 4.0 generic core scales in healthy and patient populations
-
COI: 1:STN:280:DC%2BD3MvitVGgtw%3D%3D, PID: 11468499
-
Varni, J. W., Seid, M., & Kurtin, P. S. (2001). The PedsQL™™ 4.0: reliability and validity of the pediatric quality of life inventory™ version 4.0 generic core scales in healthy and patient populations. Medical Care, 39, 800–812.
-
(2001)
Medical Care
, vol.39
, pp. 800-812
-
-
Varni, J.W.1
Seid, M.2
Kurtin, P.S.3
-
21
-
-
0036525747
-
TM generic core scale, multidimensional fatigue scale, and cancer module
-
PID: 11932914
-
TM generic core scale, multidimensional fatigue scale, and cancer module. Cancer, 94, 2090–2106.
-
(2002)
Cancer
, vol.94
, pp. 2090-2106
-
-
Varni, J.W.1
Burwinkle, T.M.2
Katz, E.R.3
Meeske, K.4
Dickinson, P.5
-
22
-
-
33846680598
-
How young can children reliably and validly self-report their health-related quality of life?: An analysis of 8,591 children across age subgroups with the PedsQL™ 4.0 generic core scales
-
PID: 17201920
-
Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). How young can children reliably and validly self-report their health-related quality of life?: An analysis of 8,591 children across age subgroups with the PedsQL™ 4.0 generic core scales. Health and Quality of Life Outcomes, 5, 1.
-
(2007)
Health and Quality of Life Outcomes
, vol.5
, pp. 1
-
-
Varni, J.W.1
Limbers, C.A.2
Burwinkle, T.M.3
-
23
-
-
85018107093
-
Psychosocial functioning, health-related quality of life, and family impact in patients with classical galactosemia (Doctoral dissertation)
-
Vierling S. C. (2011). Psychosocial functioning, health-related quality of life, and family impact in patients with classical galactosemia (Doctoral dissertation). Retrieved from Palo Alto University.
-
(2011)
Retrieved from Palo Alto University
-
-
Vierling, S.C.1
-
24
-
-
41049096402
-
Enzyme replacement therapy with idursulfase in patients with mucopolysaccharidosis type 2
-
Wraith, J. E. (2008). Enzyme replacement therapy with idursulfase in patients with mucopolysaccharidosis type 2. Acta Paedactrica, 97, 76–78.
-
(2008)
Acta Paedactrica
, vol.97
, pp. 76-78
-
-
Wraith, J.E.1
-
25
-
-
39149118050
-
Mucopolysaccharidosis type II (Hunter syndrome): a clinical review and recommendations for treatment in the era of enzyme replacement therapy
-
COI: 1:CAS:528:DC%2BD1cXhs1yltLk%3D, PID: 18038146
-
Wraith, J. E., Scarpa, M., Beck, M., Bodamer, O. A., De Meirleir, L., & Guffon, N. (2008). Mucopolysaccharidosis type II (Hunter syndrome): a clinical review and recommendations for treatment in the era of enzyme replacement therapy. European Journal of Pediatrics, 167, 267.
-
(2008)
European Journal of Pediatrics
, vol.167
, pp. 267
-
-
Wraith, J.E.1
Scarpa, M.2
Beck, M.3
Bodamer, O.A.4
De Meirleir, L.5
Guffon, N.6
-
26
-
-
0019778834
-
Psychosocial problems in Hunter syndrome
-
COI: 1:STN:280:DyaL38%2FisF2iug%3D%3D
-
Young, I. D., & Harper, P. S. (1981). Psychosocial problems in Hunter syndrome. Child Care Health Development, 7, 201–209.
-
(1981)
Child Care Health Development
, vol.7
, pp. 201-209
-
-
Young, I.D.1
Harper, P.S.2
|