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Petrus J. de Vries
University of Cape Town
PsychologyAutismTuberous sclerosisEverolimusMedicine
100Publications
17H-index
1,720Citations
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Publications 128
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There is very little evidence whether recalling and answering questions about abuse or interpersonal violence has a positive or negative impact on participants of such research. This is an important ethical dilemma to ensure an appropriate risk-benefit ratio in research with young people is maintained. We assessed reported harms, benefits, and regrets of young adolescents who participated in a sensitive research project, and compared the harms and benefits in those who had and had not been victi...
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#1Petrus J. de Vries (UCT: University of Cape Town)H-Index: 17
#2Elena Belousova (RSMU: Russian National Research Medical University)H-Index: 11
Last. José C. FerreiraH-Index: 6
view all 29 authors...
Background: Knowledge is increasing about TSC-Associated Neuropsychiatric Disorders (TAND), but little is known about the potentially confounding effects of intellectual ability (IA) on the rates of TAND across age, sex and genotype. We evaluated TAND in a) children versus adults, b) males versus females, and c) TSC1 versus TSC2 mutations, after stratification for levels of IA, in a large, international cohort. Methods: Individuals of any age with a documented visit for TSC in the 12 months prio...
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#1John-Joe Dawson-Squibb (UCT: University of Cape Town)H-Index: 1
#2Eugene Lee Davids (UCT: University of Cape Town)H-Index: 6
Last. Petrus J. de Vries (UCT: University of Cape Town)H-Index: 17
view all 5 authors...
Empowering families of children with autism spectrum disorder through education and training is best practice. A wide range of Parent Education and Training programmes are delivered around the glob...
1 CitationsSource
Background There is general consensus that child and adolescent mental health services in low- and middle-income countries have an urgent need to be strengthened. However, this require not only a universal understanding of services and service needs, but also indepth local knowledge to inform relevant service strengthening. This study sought to explore the perspectives of senior child and adolescent mental health service providers and policy-makers in one South African province to identify stren...
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#1Ruben MarquesH-Index: 2
#2Elena BelousovaH-Index: 11
Last. Rima NabboutH-Index: 44
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Introduction: The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to provide insights into the clinical characteristics of patients with Tuberous Sclerosis Complex (TSC). The aims of this study were to identify issues that arose during the design, execution, and publication phases of TOSCA, and to reflect on lessons learnt that may guide future registries in rare and complex diseases. Methods: A questionnaire was designed to identif...
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#1Ruben Marques (University of León)H-Index: 2
#2Elena Belousova (RSMU: Russian National Research Medical University)H-Index: 11
Last. Anna C. JansenH-Index: 18
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Tuberous Sclerosis Complex (TSC) is a rare autosomal-dominant disorder caused by mutations in the TSC1 or TSC2 genes. Patients with TSC may suffer from a wide range of clinical manifestations; however, the burden of TSC and its impact on healthcare resources needed for its management remain unknown. Besides, the use of resources might vary across countries depending on the country-specific clinical practice. The aim of this paper is to describe the use of TSC-related resources and treatment patt...
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#1John-Joe Dawson-Squibb (UCT: University of Cape Town)H-Index: 1
#2Petrus J. de Vries (UCT: University of Cape Town)H-Index: 17
Despite the need for parent education and training programmes in autism spectrum disorder (ASD), there is no generally-accepted evaluation framework to select programmes for different settings. Here we generated an evaluation framework using a multi-stakeholder, implementation science approach. Purposive sampling identified ASD experts, implementation/health systems experts, and parents/carers of individuals with ASD. A consensus-building stakeholder workshop with 14 stakeholders and thematic an...
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Last. Lauren FranzH-Index: 11
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Background: A lack of specialists, and insufficient infrastructure and funding to scale early interventions for autism spectrum disorder (ASD) characterize low-resource settings. Integration of early intervention methods that utilize non-specialists, and involve caregivers, into existing systems of care, offers the best hope to address such unmet needs. In South Africa, a caregiver coaching intervention, informed by principles of the Early Start Denver Model (ESDM) was adapted for delivery by no...
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#1Anna C. JansenH-Index: 18
#2Elena Belousova (RSMU: Russian National Research Medical University)H-Index: 11
Last. J.C. Kingswood (St George's, University of London)H-Index: 10
view all 28 authors...
The onset and growth of subependymal giant cell astrocytoma (SEGA) in tuberous sclerosis complex (TSC) typically occurs in childhood. There is minimal information on SEGA evolution in adults with TSC. Of 2211 patients enrolled in TOSCA, 220 of the 803 adults (27.4%) ever had a SEGA. Of 186 patients with SEGA still ongoing in adulthood, 153 (82.3%) remained asymptomatic and 33 (17.7%) were reported to ever have developed symptoms related to SEGA growth. SEGA growth since the previous scan was rep...
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#1Anna C. Jansen (Vrije Universiteit Brussel)H-Index: 18
#2Elena Belousova (RSMU: Russian National Research Medical University)H-Index: 11
Last. J.C. Kingswood (St George's, University of London)H-Index: 10
view all 29 authors...
Background: This study evaluated the characteristics of subependymal giant cell astrocytoma (SEGA) in patients with tuberous sclerosis complex (TSC) entered into the TuberOus SClerosis registry to increase disease Awareness (TOSCA). Methods: The study was conducted at 170 sites across 31 countries. Data from patients of any age with a documented clinical visit for TSC in the 12 months preceding enrolment or those newly diagnosed with TSC were entered. Results: SEGA were reported in 554 of 2216 p...
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