Detalhe da pesquisa
1.
Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study.
Am J Med Genet A;
194(7): e63570, 2024 Jul.
Artigo
em Inglês
| MEDLINE
| ID: mdl-38425131
2.
How Well Does the EQ-5D-Y-5L Describe Children With Intellectual Disability?: "There's a Lot More to My Child Than That She Can't Wash or Dress Herself."
Value Health;
27(2): 190-198, 2024 Feb.
Artigo
em Inglês
| MEDLINE
| ID: mdl-38043713
3.
Psychometric Properties of the EQ-5D-Y-5L for Children With Intellectual Disability.
Value Health;
27(6): 776-783, 2024 Jun.
Artigo
em Inglês
| MEDLINE
| ID: mdl-38467188
4.
Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability.
Int J Equity Health;
23(1): 119, 2024 Jun 07.
Artigo
em Inglês
| MEDLINE
| ID: mdl-38849806
5.
Growth patterns in individuals with CDKL5 deficiency disorder.
Dev Med Child Neurol;
66(4): 469-482, 2024 Apr.
Artigo
em Inglês
| MEDLINE
| ID: mdl-37804112
6.
What does better look like in individuals with severe neurodevelopmental impairments? A qualitative descriptive study on SCN2A-related developmental and epileptic encephalopathy.
Qual Life Res;
33(2): 519-528, 2024 Feb.
Artigo
em Inglês
| MEDLINE
| ID: mdl-38064015
7.
Genotype and sleep independently predict mental health in Rett syndrome: an observational study.
J Med Genet;
60(10): 951-959, 2023 10.
Artigo
em Inglês
| MEDLINE
| ID: mdl-37055168
8.
Psychometric properties of QI-Disability in CDKL5 Deficiency Disorder: Establishing readiness for clinical trials.
Epilepsy Behav;
139: 109069, 2023 02.
Artigo
em Inglês
| MEDLINE
| ID: mdl-36634535
9.
A Co-Designed Online Education Resource on Gastrostomy Feeding for Parents and Caregivers to Support Clinical Care.
J Pediatr Gastroenterol Nutr;
77(5): 672-678, 2023 11 01.
Artigo
em Inglês
| MEDLINE
| ID: mdl-37612813
10.
Can telehealth increase physical activity in individuals with Rett syndrome? A multicentre randomized controlled trial.
Dev Med Child Neurol;
65(4): 489-497, 2023 04.
Artigo
em Inglês
| MEDLINE
| ID: mdl-36284370
11.
Factors influencing participation in home, school, and community settings by children and adolescents with neuromuscular disorders: A qualitative descriptive study.
Dev Med Child Neurol;
65(5): 664-673, 2023 05.
Artigo
em Inglês
| MEDLINE
| ID: mdl-36303274
12.
Oral parafunction and bruxism in Rett syndrome and associated factors: An observational study.
Oral Dis;
29(1): 220-231, 2023 Jan.
Artigo
em Inglês
| MEDLINE
| ID: mdl-34033206
13.
Associations between the human immune system and gut microbiome with neurodevelopment in the first 5 years of life: A systematic scoping review.
Dev Psychobiol;
65(2): e22360, 2023 03.
Artigo
em Inglês
| MEDLINE
| ID: mdl-36811373
14.
Strengths and challenging behaviors in children and adolescents with Prader-Willi syndrome: Two sides to the coin.
Am J Med Genet A;
188(5): 1488-1496, 2022 05.
Artigo
em Inglês
| MEDLINE
| ID: mdl-35092339
15.
Influences on the trajectory and subsequent outcomes in CDKL5 deficiency disorder.
Epilepsia;
63(2): 352-363, 2022 02.
Artigo
em Inglês
| MEDLINE
| ID: mdl-34837650
16.
Negative impact of insomnia and daytime sleepiness on quality of life in individuals with the cyclin-dependent kinase-like 5 deficiency disorder.
J Sleep Res;
31(5): e13600, 2022 10.
Artigo
em Inglês
| MEDLINE
| ID: mdl-35415902
17.
Modelling quality of life in children with intellectual disability using regression trees.
Dev Med Child Neurol;
64(9): 1145-1155, 2022 09.
Artigo
em Inglês
| MEDLINE
| ID: mdl-35322406
18.
Daytime sleepiness and emotional and behavioral disturbances in Prader-Willi syndrome.
Eur J Pediatr;
181(6): 2491-2500, 2022 Jun.
Artigo
em Inglês
| MEDLINE
| ID: mdl-35316366
19.
Determinants of quality of life in Rett syndrome: new findings on associations with genotype.
J Med Genet;
58(9): 637-644, 2021 09.
Artigo
em Inglês
| MEDLINE
| ID: mdl-32843489
20.
Employing cognitive interviewing to evaluate, improve and validate items for measuring the health-related quality of life of women diagnosed with ovarian cancer.
BMC Womens Health;
22(1): 391, 2022 09 27.
Artigo
em Inglês
| MEDLINE
| ID: mdl-36163023