selected scholarly activity
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books
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chapters
- Working with child and family 2022
- Your ‘Only’ Is My Everything: Mothering Children with Disabilities through COVID-19 2021
- Inklusion und Gesundheit 2015
- Herausgeber. V-VI. 2014
- Internationale Klassifikation der Funktionsfähigkeit, Behinderung und Gesundheit: Version für Kinder und Jugendliche (ICF–CY). 267-276. 2014
- Management and Treatment of Sleep Problems in Children with Severe Disabilities [Umgang und Behandlung von Schlafstörungen bei Kindern mit schwersten Behinderungen]. 84-101. 2007
- Bilingualism in Children with Developmental Disabilities - Handicap or Ressource? [Zweisprachigkeit bei Kindern mit Entwicklungsstörungen - Handicap oder Ressource?]. 183-195. 2004
- Optimizing Physiotherapy by Implementing an Interdisciplinary Evaluation [Therapieoptimierung der Physiotherapie durch Implementierung einer interdisziplinären Evaluation]. 520-524. 1998
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conferences
- Content comparison of the qualitative data informing the CLEFT-Q to generic instruments (Peds-QL 4.0, CHQ, KINDL) using the ICF-CY classification. Quality of Life Research. 28-29. 2012
- PARENTAL KNOWLEDGE AND HEALTH CARE SATISFACTION WITH NEUROFIBROMATOSIS TYPE 1. Neuro-Oncology. 129-129. 2012
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internet publications
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journal articles
- Working together makes us better: Including lived experience in research.. Developmental Medicine and Child Neurology. 2024
- Home Participation of Infants With and Without Biological Risk in the First Year of Life: A Cross-Sectional and Comparative Study.. Physical and Occupational Therapy in Pediatrics. ahead-of-print:1-16. 2024
- Development, implementation, and scalability of the Family Engagement in Research Course: a novel online course for family partners and researchers in neurodevelopmental disability and child health. Research Involvement and Engagement. 10:80. 2024
- Home participation and personal and environmental factors in children and adolescents with Down syndrome. Developmental Medicine and Child Neurology. 66:1031-1044. 2024
- Participação em casa e fatores pessoais e ambientais em crianças e adolescentes com síndrome de Down. Developmental Medicine and Child Neurology. 66:e148-e162. 2024
- The Association Between Autism Symptomatology and Adaptive Functioning Over Six Months: Findings from the Pilot Phase of the PARC Study. Journal of Autism and Developmental Disorders. 2024
- What do parents want from healthcare services? Reports of parents’ experiences with pediatric service delivery for their children with disabilities. Disability and Rehabilitation. 46:2670-2683. 2024
- Family-centered service through the eyes of insiders: Healthcare providers who are parents speak about receiving and providing healthcare in child health. Research in Developmental Disabilities. 149:104746-104746. 2024
- The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism. BMJ Open. 14:e083045-e083045. 2024
- Association between participation at home and functional skills in children and adolescents with Down syndrome: A cross‐sectional study. Child: Care, Health and Development. 50:e13197. 2024
- Editorial: International Day of Persons with Disabilities - children's disabilities.. Frontiers in Public Health. 12:1483318. 2024
- The international classification of functioning, disability and health in clinical practice, research findings and their impact on training and education.. Frontiers in Rehabilitation Sciences. 5:1420498. 2024
- What supports and services post COVID-19 do children with disabilities and their parents need and want, now and into the future?. Frontiers in Public Health. 12:1294340. 2024
- Growing into adulthood with Duchenne muscular dystrophy. Journal of the Neurological Sciences. 455:122036-122036. 2023
- Sustainable Development Goals summit 2023 and the global pledge on disability-focused early childhood development. The Lancet Global Health. 11:e823-e825. 2023
- Psychometric properties of the English language version of the C-BiLLT evaluated in typically developing Canadian children. Journal of Pediatric Rehabilitation Medicine. 16:71-81. 2023
- Perceived Social Support and Quality of Life of Children with and without Developmental Disabilities and Their Caregivers during the COVID-19 Pandemic in Brazil: A Cross-Sectional Study. International Journal of Environmental Research and Public Health. 20:4449-4449. 2023
- Teaching interprofessional collaboration among future healthcare professionals. Frontiers in Psychology. 14:1185730. 2023
- Connecting for Care: a protocol for a mixed-method social network analysis to advance knowledge translation in the field of child development and rehabilitation. Implementation Science Communications. 3:127. 2022
- Functioning of children and adolescents with Down syndrome and the association with environmental barriers and facilitators during the COVID-19 pandemic. Journal of Intellectual Disabilities. 26:824-838. 2022
- Person-reported perspectives on support availability for people with disabilities during the COVID-19 pandemic in Quebec. Canadian Journal of Public Health. 113:834-845. 2022
- Exploration of the Feasibility of Remote Assessment of Functioning in Children and Adolescents with Developmental Disabilities: Parents’ Perspectives and Related Contextual Factors. International Journal of Environmental Research and Public Health. 19:15101-15101. 2022
- Training Intervention and Program of Support for Fostering the Adoption of Family-Centered Telehealth in Pediatric Rehabilitation: Protocol for a Multimethod, Prospective, Hybrid Type 3 Implementation-Effectiveness Study. JMIR Research Protocols. 11:e40218-e40218. 2022
- 20 Years of ICF—International Classification of Functioning, Disability and Health: Uses and Applications around the World. International Journal of Environmental Research and Public Health. 19:11321-11321. 2022
- Training Intervention and Program of Support (TIPS) for fostering adoption of family-centred telehealth in pediatric rehabilitation: Protocol for a multi-method, prospective hybrid type 3 implementation-effectiveness study (Preprint) 2022
- Child health, inclusive education and development. Bulletin of the World Health Organization. 100:459-461. 2022
- Accelerating progress on early childhood development for children under 5 years with disabilities by 2030. The Lancet Global Health. 10:e438-e444. 2022
- Cerebral palsy and developmental intellectual disability in children younger than 5 years: Findings from the GBD-WHO Rehabilitation Database 2019. Frontiers in Public Health. 10:894546. 2022
- Editorial: Families and Functioning in Childhood and Adolescence. Frontiers in Rehabilitation Sciences. 3:858239. 2022
- The Role of Parenting Interventions in Optimizing School Readiness for Children With Disabilities in Low and Middle Income Settings. Frontiers in Pediatrics. 10:927678. 2022
- Building a culture of engagement at a research centre for childhood disability. Research Involvement and Engagement. 7:78. 2021
- Impact of lockdown and school closure on children’s health and well-being during the first wave of COVID-19: a narrative review. BMJ Paediatrics Open. 5:e001043-e001043. 2021
- Investigating the Associations Between Child Autistic Symptoms, Socioeconomic Context, and Family Life: A Pilot Study. Frontiers in Rehabilitation Sciences. 2:748346. 2021
- Avoiding the Banality of Evil in Times of COVID-19: Thinking Differently with a Biopsychosocial Perspective for Future Health and Social Policies Development. SN Comprehensive Clinical Medicine. 2:1758-1760. 2020
- Do the commonly used standard questionnaires measure what is of concern to patients with low back pain?. Clinical Rehabilitation. 34:1313-1324. 2020
- How Can We Create Osler’s “Great Physician”? Fundamentals for Physicians’ Competency in the Twenty-first Century. Medical Science Educator. 30:1279-1284. 2020
- Common content between quality of life questionnaires for children with cystic fibrosis and the International Classification of Functionality, Disability and Health.. Journal of Rehabilitation Medicine. 51:0-0. 2019
- Pediatric Feeding Disorder. Journal of Pediatric Gastroenterology and Nutrition. 68:124-129. 2019
- International Classification of Functioning, Disability and Health Core Sets: moving forward. Developmental Medicine and Child Neurology. 60:857-858. 2018
- A Proposed Functional Abilities Classification Tool for Developmental Disorders Affecting Learning and Behaviour. Frontiers in Education. 3:2. 2018
- Using the ICF in transition research and practice? Lessons from a scoping review. Research in Developmental Disabilities. 72:225-239. 2018
- Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability. Journal of Medical Internet Research. 18:e293-e293. 2016
- ICanFunction – the mobile ICF (mICF) app to assess functioning and disability. Physiotherapy. 102:e219-e219. 2016
- The International Classification of Functioning framework in Zika-related disabilities. European Journal of Paediatric Neurology. 20:946-947. 2016
- Personbezogene Faktoren und Teilhabe. Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz. 59:1133-1138. 2016
- Do we really need to open a classification box on personal factors in ICF?. Disability and Rehabilitation. 38:1327-1328. 2016
- Number of needs: a meaningful metric in childhood disability. Developmental Medicine and Child Neurology. 58:532-533. 2016
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Development and validation of a generic scale for use in transition programmes to measure self‐management skills in adolescents with chronic health conditions: the
TRANSITION ‐Q . Child: Care, Health and Development. 41:547-558. 2015 - Patient-important activity and participation outcomes in clinical trials involving children with chronic conditions. Quality of Life Research. 23:751-757. 2014
- Transition programs. The North-American experience. Internistische Praxis. 53:695-700. 2013
- Transition programs. The North-American Experience. Tagliche Praxis. 54:587-592. 2013
- [Chronic illnesses in childhood: diagnosis - disability - identity].. Kinderkrankenschwester : Organ der Sektion Kinderkrankenpflege / Deutsche Gesellschaft fur Sozialpadiatrie und Deutsche Gesellschaft fur Kinderheilkunde. 32:221-226. 2013
- Transition programs. The North-American experience. Padiatrische Praxis. 80:115-120. 2013
- Generic patient‐reported outcomes in child health research: a review of conceptual content using World Health Organization definitions. Developmental Medicine and Child Neurology. 54:1085-1095. 2012
- Systems of care: transition from the bio‐psycho‐social perspective of the International Classification of Functioning, Disability and Health. Child: Care, Health and Development. 37:792-799. 2011
- Diseases of the Nervous System in Childhood, Third Edition. Journal of Developmental and Behavioral Pediatrics. 31:581-581. 2010
- The early-aid-system in Germany. International Journal of Early Childhood Special Education. 2:111-123. 2010
- [Sick juveniles fall into a service gap upon maturation.German Society of Social Pediatrics and Youth Medicine requests clear and smooth flowing care transition regulations].. Kinderkrankenschwester : Organ der Sektion Kinderkrankenpflege / Deutsche Gesellschaft fur Sozialpadiatrie und Deutsche Gesellschaft fur Kinderheilkunde. 29:77. 2010
- Process Quality Assurance of Inpatient Treatment Settings in Social Paediatrics [Prozessqualität bei stationärer sozialpädiatrischer Behandlung]. Kinderarztliche Praxis. 80:152-156. 2009
- Transitional Care of Adolescents into Adulthood - New Perspectives also for the Future of Social Paediatrics [Übergangsversorgung vom Jugendlichen ins Erwachsenenalter - Neue Zukunftsperspektiven auch für die Sozialpädiatrie]. Kinderarztliche Praxis. 79:374-376. 2008
- Understanding Professional Roles of Different Disciplines in Early Intervention [Professionelles Rollenverständnis verschiedener Disziplinen in der interdisziplinären Frühförderung]. Praxis der Psychomotorik. 33:4-7. 2008
- Die ICF-CY als Checkliste und Dokumentationsraster in der Praxis der Frühförderung. Frühförderung interdisziplinär. 26:158-166. 2007
- Assessments in neurological rehabilitation of children and adolescents. Neurologie und Rehabilitation. 13:15-23. 2007
- . European Journal of Paediatric Neurology. 9:435-435. 2005
- . European Journal of Paediatric Neurology. 9:371-372. 2005
- Generalized epilepsy with febrile seizures plus. Neurology. 57:1191-1198. 2001
- Neonatal and neurodevelopmental outcome in infants born before 30 weeks of gestation with absent or reversed end-diastolic flow velocities in the umbilical artery. European Journal of Pediatrics. 160:128-134. 2001
- Drug points: Agranulocytosis associated with lamotrigine. The BMJ. 318:1179-1179. 1999
- Was ist therapeutischer Erfolg?. Monatsschrift für Kinderheilkunde. 146:1160-1166. 1998
- Video-based documentation and rating system of the motor behaviour of handicapped children treated with physiotherapy —a new outcome measure. Developmental Neurorehabilitation. 2:21-26. 1998
- [Assessment of intestinal permeability using 51 CrEDTA: clinical usefulness in the detection of small bowel epithelial structural abnormalities].. Arquivos de Gastroenterologia. 33:66-73. 1996
- CHILDREN ARE THE FUTURE - THEIR DEVELOPMENT MATTERS REPORT: FIRST INTERNATIONAL DEVELOPMENTAL PEDIATRICS CONGRESS. Brazilian Journal of Medicine and Human Health. 4.
- ICF-CY – Hilfreich für die tägliche Arbeit. Ergopraxis. 7:51-51.
- Knowledge and use of the international classifification of functioning, disability and health (icf) among health professionals in a developing country. Pakistan Journal of Neurological Sciences. 15:23-25.
- Sicherstellung von aktiver Teilhabe (Partizipation) bei komplexen Beeinträchtigungen mit Hilfe der ICF. Sonderpädagogische Förderung heute. 418-434.
- The Early-Aid-System in Germany. International Journal of Early Childhood Special Education. 2:111-123.
- What was the community support offered to people with disabilities during the COVID-19 pandemic in Brazil? A pilot study as part of a global survey.. International Journal of Health Science. 3:2-22.
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posters
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preprints