Jennepher Anne Downs (Jenny Anne Downs, J Downs, Jenny Downs)

ResearcherID ORCID

Publication Activity (10 Years)

Years Active: 2017-2024
Publications (10 Years): 71

Top Topics

Systematic Review

Duchenne Muscular Dystrophy

Intellectual Disability

Psychometric Properties

Top Venues

American journal of medical genetics. Part A

Developmental medicine and child neurology

Journal of child neurology

This page only lists publications with an associated author ORCID identifier.

Publications

Jacinta M Saldaris, Jeremiah Ayalde, Samali Kankanange, Jessica Keeley, Helen Margaret Leonard, Peter Jacoby, Eric D Marsh, Timothy A Benke, Scott T Demarest, Jennepher Anne Downs
Parent-reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic review. International journal of language & communication disorders (2024)
Jessica Keeley, Sofia Benson-Goldberg, Jacinta Saldaris, Judy Lariviere, Helen Leonard, Eric D Marsh, Scott T Demarest, Tim A Benke, Peter Jacoby, Jennepher Anne Downs
Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study. American journal of medical genetics. Part A 194 (7) (2024)
Jessica Keeley, Sofia Benson-Goldberg, Jacinta Saldaris, Judy Lariviere, Helen Leonard, Eric D Marsh, Scott T Demarest, Tim A Benke, Peter Jacoby, Jennepher Anne Downs
Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study. American journal of medical genetics. Part A (2024)
Jessica Keeley, Sofia Benson-Goldberg, Jacinta Saldaris, Judy Lariviere, Helen Leonard, Eric D Marsh, Scott T Demarest, Tim A Benke, Peter Jacoby, Jennepher Anne Downs
Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study. American journal of medical genetics. Part A (2024)
Jessica Keeley, Sofia Benson-Goldberg, Jacinta Saldaris, Judy Lariviere, Helen Leonard, Eric D Marsh, Scott T Demarest, Tim A Benke, Peter Jacoby, Jennepher Anne Downs
Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study. American journal of medical genetics. Part A 194 (7) (2024)
Jessica Keeley, Sofia Benson-Goldberg, Jacinta Saldaris, Judy Lariviere, Helen Leonard, Eric D Marsh, Scott T Demarest, Tim A Benke, Peter Jacoby, Jennepher Anne Downs
Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study. American journal of medical genetics. Part A 194 (7) (2024)
Jacinta M Saldaris, Peter Jacoby, Jennepher Anne Downs, Eric D Marsh, Helen Margaret Leonard, Elia M Pestana Knight, Rajsekar Rajaraman, Judith Weisenberg, Bernhard Suter, Heather E Olson, Dana Price, William Hong, Erin Prange, Timothy A Benke, Scott T Demarest
Psychometric evaluation of clinician- and caregiver-reported clinical severity assessments for individuals with CDKL5 deficiency disorder. Epilepsia (2024)
Anne T Berg, Natasha N Ludwig, Mary Wojnaroski, Chere A T Chapman, Rebecca Hommer, Gabrielle Conecker, JayEtta Z Hecker, Jennepher Anne Downs
FDA Patient-Focused Drug Development Guidances. Neurology 102 (1) (2023)
Dani John Cherian, Daniel Ta, Jeremy Smith, Jennepher Anne Downs, Helen Margaret Leonard
How Families Manage the Complex Medical Needs of Their Children with MECP2 Duplication Syndrome. Children (Basel, Switzerland) 10 (7) (2023)
Jennepher Anne Downs, Natasha N Ludwig, Mary Wojnaroski, Jessica Keeley, Leah Schust Myers, Chere A T Chapman, JayEtta Z Hecker, Gabrielle Conecker, Anne T Berg
What does better look like in individuals with severe neurodevelopmental impairments? A qualitative descriptive study on SCN2A-related developmental and epileptic encephalopathy. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation (2023)
Anne T Berg, Natasha N Ludwig, Mary Wojnaroski, Chere A T Chapman, Rebecca Hommer, Gabrielle Conecker, JayEtta Z Hecker, Jennepher Anne Downs
FDA Patient-Focused Drug Development Guidances: Considerations for Trial Readiness in Rare Developmental and Epileptic Encephalopathies Neurology 102 (1) (2023)
Anne T Berg, Natasha N Ludwig, Mary Wojnaroski, Chere A T Chapman, Rebecca Hommer, Gabrielle Conecker, JayEtta Z Hecker, Jennepher Anne Downs
FDA Patient-Focused Drug Development Guidances: Considerations for Trial Readiness in Rare Developmental and Epileptic Encephalopathies Neurology 102 (1) (2023)
Anne T Berg, Natasha N Ludwig, Mary Wojnaroski, Chere A T Chapman, Rebecca Hommer, Gabrielle Conecker, JayEtta Z Hecker, Jennepher Anne Downs
FDA Patient-Focused Drug Development Guidances. Neurology 102 (1) (2023)
Cayla Kay, Helen Margaret Leonard, Jeremy Smith, Kingsley Wong, Jennepher Anne Downs
Genotype and sleep independently predict mental health in Rett syndrome: an observational study. Journal of medical genetics (2023)
Anne T Berg, Natasha N Ludwig, Mary Wojnaroski, Chere A T Chapman, Rebecca Hommer, Gabrielle Conecker, JayEtta Z Hecker, Jennepher Anne Downs
FDA Patient-Focused Drug Development Guidances: Considerations for Trial Readiness in Rare Developmental and Epileptic Encephalopathies Neurology 102 (1) (2023)
Meir Lotan, Jennepher Anne Downs, Michelle Stahlhut, Alberto Romano
Evaluation Tools Developed for Rett Syndrome. Diagnostics (Basel, Switzerland) 13 (10) (2023)
Jacinta Saldaris, Helen Leonard, Kingsley Wong, Peter Jacoby, Mary Spence, Eric D Marsh, Tim A Benke, Scott Demarest, Jennepher Anne Downs
Validating the Communication and Symbolic Behavior Scales-Developmental Profile Infant-Toddler Checklist (CSBS-DP ITC) Beyond Infancy in the CDKL5 Deficiency Disorder. Journal of autism and developmental disorders (2023)
Kingsley Wong, George Davies, Helen Margaret Leonard, Jennepher Anne Downs, Mohammed Junaid, Sam Amin
Growth patterns in individuals with CDKL5 deficiency disorder. Developmental medicine and child neurology (2023)
Anne T Berg, Natasha N Ludwig, Mary Wojnaroski, Chere A T Chapman, Rebecca Hommer, Gabrielle Conecker, JayEtta Z Hecker, Jennepher Anne Downs
FDA Patient-Focused Drug Development Guidances: Considerations for Trial Readiness in Rare Developmental and Epileptic Encephalopathies Neurology 102 (1) (2023)
Yvonne Yee Lok Lai, Jennepher Anne Downs, Kingsley Wong, Sobia Zafar, James Laurence Walsh, Helen Margaret Leonard
Enablers and barriers in dental attendance in Rett syndrome: an international observational study. Special care in dentistry : official publication of the American Association of Hospital Dentists, the Academy of Dentistry for the Handicapped, and the American Society for Geriatric Dentistry 42 (6) (2022)
Jacinta Saldaris, Helen Leonard, Peter Jacoby, Eric D Marsh, Tim A Benke, Scott T Demarest, Jennepher Anne Downs
Initial Validation and Reliability of the CDKL5 Deficiency Disorder Hand Function Scale (CDD-Hand). Journal of child neurology 37 (6) (2022)
Yvonne Yee Lok Lai, Jennepher Anne Downs, Sobia Zafar, Kingsley Wong, James Laurence Walsh, Helen Margaret Leonard
"What about us?"- the drawbacks of current bruxism assessment criteria in evaluating vulnerable groups. Oral diseases (2022)
Peter Jacoby, Andrew J O Whitehouse, Helen Margaret Leonard, Jacinta M Saldaris, Scott Demarest, Tim Benke, Jennepher Anne Downs
Devising a Missing Data Rule for a Quality of Life Questionnaire-A Simulation Study. Journal of developmental and behavioral pediatrics : JDBP 43 (6) (2022)
Jennepher Anne Downs, Peter Jacoby, Jacinta Saldaris, Helen Leonard, Tim Benke, Eric Marsh, Scott Demarest
Negative impact of insomnia and daytime sleepiness on quality of life in individuals with the cyclin-dependent kinase-like 5 deficiency disorder. Journal of sleep research 31 (5) (2022)
Jennepher Anne Downs, A Marie Blackmore, Wai Chen, Gillian M Nixon, Catherine S Choong
Strengths and challenging behaviors in children and adolescents with Prader-Willi syndrome: Two sides to the coin. American journal of medical genetics. Part A 188 (5) (2022)
Scott T Demarest, Rebekah Marsh, Lauren Treat, Michael P Fisher, Amanda Dempsey, Mohammed Junaid, Jennepher Anne Downs, Helen Leonard, Tim Benke, Megan A Morris
The Lived Experience of Parents' Receiving the Diagnosis of CDKL5 Deficiency Disorder for Their Child. Journal of child neurology 37 (6) (2022)
Catherine S Choong, Gillian M Nixon, Amanda Marie Blackmore, Wai Chen, Peter Jacoby, Helen Margaret Leonard, Antony R Lafferty, Geoffrey R Ambler, Nitin Kapur, Philip B Bergman, Cara Schofield, Chris Seton, Andrew Tai, Elaine Tham, Komal Ashokbhai Vora, Patricia Crock, Charles F Verge, Yassmin Musthaffa, Greg Blecher, Andrew Wilson, Jennepher Anne Downs
Daytime sleepiness and emotional and behavioral disturbances in Prader-Willi syndrome. European journal of pediatrics 181 (6) (2022)
Jennepher Anne Downs, Amanda Marie Blackmore, Kingsley Wong, Nicholas Buckley, Meir Lotan, Cochavit Elefant, Helen Margaret Leonard, Michelle Stahlhut
Can telehealth increase physical activity in individuals with Rett syndrome? A multicentre randomized controlled trial. Developmental medicine and child neurology (2022)
Peter Jacoby, Katrina Williams, Dinah Susan Reddihough, Helen Margaret Leonard, Andrew Whitehouse, Jennepher Anne Downs
Modelling quality of life in children with intellectual disability using regression trees. Developmental medicine and child neurology 64 (9) (2022)
Wai Chen, Amy Epstein, Michele Toner, Nada Murphy, Daniel Rudaizky, Jennepher Anne Downs
Enabling successful life engagement in young people with ADHD: new components beyond adult models of recovery. Disability and rehabilitation (2022)
Aysha Stroobach, Andrew C Wilson, Jenny Lam, Graham L Hall, Adelaide Withers, Jennepher Anne Downs
Factors influencing participation in home, school, and community settings by children and adolescents with neuromuscular disorders: A qualitative descriptive study. Developmental medicine and child neurology (2022)
Jessica Mackay, Gillian M Nixon, Antony R Lafferty, Geoff Ambler, Nitin Kapur, Philip B Bergman, Cara Schofield, Chris Seton, Andrew Tai, Elaine Tham, Komal Vora, Patricia Crock, Charles Verge, Yassmin Musthaffa, Greg Blecher, Daan Caudri, Helen Leonard, Peter Jacoby, Andrew Wilson, Catherine S Choong, Jennepher Anne Downs
Associations Between Hyperphagia, Symptoms of Sleep Breathing Disorder, Behaviour Difficulties and Caregiver Well-Being in Prader-Willi Syndrome: A Preliminary Study. Journal of autism and developmental disorders (2021)
Sharolin Boban, Jennepher Anne Downs, Jim Codde, Paul Andrew Cohen, Caroline E Bulsara
Women Diagnosed with Ovarian Cancer: Patient and Carer Experiences and Perspectives. Patient related outcome measures 12 (2021)
Vivienne Travlos, Shane Patman, Jennepher Anne Downs, Dana Hince, Andrew C Wilson
Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular Disorders. Developmental neurorehabilitation 24 (7) (2021)
Daan Caudri, Gillian M Nixon, Aleisha Nielsen, Linda Mai, Claire R Hafekost, Nitin Kapur, Chris Seton, Andrew Tai, Greg Blecher, Geoffrey R Ambler, Philip B Bergman, Komal Ashokbhai Vora, Patricia Crock, Charles F Verge, Elaine Tham, Yassmin Musthaffa, Antony R Lafferty, Peter Jacoby, Andrew C Wilson, Jennepher Anne Downs, Catherine S Choong
Sleep-disordered breathing in Australian children with Prader-Willi syndrome following initiation of growth hormone therapy. Journal of paediatrics and child health (2021)
Paolo La Montanara, Arnau Hervera, Lucas L Baltussen, Thomas H Hutson, Ilaria Palmisano, Francesco De Virgiliis, Guiping Kong, Jessica S Chadwick, Yunan Gao, Katalin Bartus, Qasim A Majid, Nikos Gorgoraptis, Kingsley Wong, Jennepher Anne Downs, Tommaso Pizzorusso, Sila K Ultanir, Helen Margaret Leonard, Hongwei Yu, David S Millar, Istvan Nagy, Nicholas D Mazarakis, Simone Di Giovanni
Cyclin-dependent-like kinase 5 is required for pain signaling in human sensory neurons and mouse models. Science translational medicine 12 (551) (2021)
Jacinta Saldaris, Judith Weisenberg, Elia Pestana-Knight, Eric D Marsh, Bernhard Suter, Rajsekar Rajaraman, Gena Heidary, Heather E Olson, Orrin Devinsky, Dana Price, Peter Jacoby, Helen Leonard, Tim A Benke, Scott Demarest, Jennepher Anne Downs
Content Validation of Clinician-Reported Items for a Severity Measure for CDKL5 Deficiency Disorder. Journal of child neurology 36 (11) (2021)
Yvonne Yee Lok Lai, Jennepher Anne Downs, Sobia Zafar, Kingsley Wong, James Laurence Walsh, Helen Margaret Leonard
Oral health care and service utilisation in individuals with Rett syndrome: an international cross-sectional study. Journal of intellectual disability research : JIDR 65 (6) (2021)
Helen Margaret Leonard, Mohammed Junaid, Kingsley Wong, Alex A Aimetti, Elia Pestana Knight, Jennepher Anne Downs
Influences on the trajectory and subsequent outcomes in CDKL5 deficiency disorder. Epilepsia (2021)
Hanneke Borst, Josianne Weeda, Jennepher Anne Downs, Leopold M G Curfs, Robert A de Bie
The Rett Syndrome Gross Motor Scale - Dutch Version (RSGMS-NL) Can Reliably Assess Gross Motor Skills in Dutch Individuals with Rett Syndrome. Developmental neurorehabilitation (2021)
Amy Louise Finlay-Jones, Jetro Emanel Ang, Elaine Bennett, Jennepher Anne Downs, Sally Kendall, Keerthi Kottampally, Sheila Krogh-Jespersen, Yi Huey Lim, Leigha A MacNeill, Vincent O Mancini, Rhonda Marriott, Helen Milroy, Monique Robinson, Justin D Smith, Lauren S Wakschlag, Jeneva Lee Ohan
Caregiver-mediated interventions to support self-regulation among infants and young children (0-5 years): a protocol for a realist review. BMJ open 11 (6) (2021)
Anne-Marie Bisgaard, Kingsley Wong, Anne-Katrine Højfeldt, Jane Lunding Larsen, Bitten Schönewolf-Greulich, Gitte Rønde, Jennepher Anne Downs, Michelle Stahlhut
Decline in gross motor skills in adult Rett syndrome; results from a Danish longitudinal study. American journal of medical genetics. Part A 185 (12) (2021)
Melissa Gilbertson, Cele E Richardson, Peter Eastwood, Andrew Wilson, Peter Jacoby, Helen Leonard, Jennepher Anne Downs
Determinants of sleep problems in children with intellectual disability. Journal of sleep research 30 (5) (2021)
Nicholas Buckley, Michelle Stahlhut, Cochavit Elefant, Helen Leonard, Meir Lotan, Jennepher Anne Downs
Parent and therapist perspectives on "uptime" activities and participation in Rett syndrome. Disability and rehabilitation (2021)
A J O Whitehouse, P Jacoby, D Reddihough, H Leonard, K Williams, Jennepher Anne Downs
The effect of functioning on Quality of Life Inventory-Disability measured quality of life is not mediated or moderated by parental psychological distress. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 30 (10) (2021)
Dinah Reddihough, Helen Leonard, Peter Jacoby, Rachel Kim, Amy Epstein, Nada Murphy, Sue Reid, Andrew Whitehouse, Katrina Williams, Jennepher Anne Downs
Comorbidities and quality of life in children with intellectual disability. Child: care, health and development 47 (5) (2021)
Conor I MacKay, Kingsley Wong, Scott T Demarest, Tim A Benke, Jennepher Anne Downs, Helen Margaret Leonard
Exploring genotype-phenotype relationships in the CDKL5 deficiency disorder using an international dataset. Clinical genetics 99 (1) (2020)
Katrina Williams, Peter Jacoby, Andrew Whitehouse, Rachel Kim, Amy Epstein, Nada Murphy, Susan M Reid, Helen Margaret Leonard, Dinah Reddihough, Jennepher Anne Downs
Functioning, participation, and quality of life in children with intellectual disability: an observational study. Developmental medicine and child neurology 63 (1) (2020)
Jennepher Anne Downs, Meir Lotan, Cochavit Elefant, Helen Margaret Leonard, Kingsley Wong, Nicholas Buckley, Michelle Stahlhut
Implementing telehealth support to increase physical activity in girls and women with Rett syndrome-ActivRett: protocol for a waitlist randomised controlled trial. BMJ open 10 (12) (2020)
K Wong, E J Glasson, P Jacoby, P Srasuebkul, D Forbes, M Ravikumara, A Wilson, J Bourke, J Trollor, H Leonard, L Nagarajan, Jennepher Anne Downs
Survival of children and adolescents with intellectual disability following gastrostomy insertion. Journal of intellectual disability research : JIDR 64 (7) (2020)
Emma J Glasson, David Forbes, Madhur Ravikumara, Lakshmi Nagarajan, Andrew Wilson, Peter Jacoby, Kingsley Wong, Helen Leonard, Jennepher Anne Downs
Gastrostomy and quality of life in children with intellectual disability: a qualitative study. Archives of disease in childhood 105 (10) (2020)
Nora Shields, Amy Epstein, Peter Jacoby, Rachel Kim, Helen Margaret Leonard, Dinah Susan Reddihough, Andrew J O Whitehouse, Nada Murphy, Jennepher Anne Downs
Modifiable child and caregiver factors that influence community participation among children with Down syndrome. Disability and rehabilitation 44 (4) (2020)
Conor I MacKay, David Bick, Jeremy W Prokop, Ivan Muñoz, John Rouse, Jennepher Anne Downs, Helen Margaret Leonard
Expanding the phenotype of the CDKL5 deficiency disorder: Are seizures mandatory? American journal of medical genetics. Part A 182 (5) (2020)
Yvonne Yee Lok Lai, Sobia Zafar, Helen Margaret Leonard, James Laurence Walsh, Jennepher Anne Downs
Oral health education and promotion in special needs children: Systematic review and meta-analysis. Oral diseases (2020)
Klair Bayley, Stephanie Parkinson, Peter Jacoby, Donna Cross, Sue Morris, Nitamarie Vorster, Cara Schofield, Maina Kava, Aris Siafarikas, Kerry Evans, Odette Gaynor, Linda Chiu, Monique M Ryan, Anita Cairns, Damian Clark, Jennepher Anne Downs
Benefits of powered standing wheelchair devices for adolescents with Duchenne muscular dystrophy in the first year of use. Journal of paediatrics and child health 56 (9) (2020)
C Schofield, K Evans, Helena Young, Sarah-Grace Paguinto, Kate Carroll, E Townsend, M Kiefer, M McGuire, J Sodhi, P Bray, K Bayley, N M Vorster, Jennepher Anne Downs
The development of a consensus statement for the prescription of powered wheelchair standing devices in Duchenne muscular dystrophy. Disability and rehabilitation (2020)
Nicholas Buckley, Emma J Glasson, Wai Chen, Amy Epstein, Helen Leonard, Rachel Skoss, Peter Jacoby, Amanda Marie Blackmore, Ravisha Srinivasjois, Jenny Bourke, Richard J Sanders, Jennepher Anne Downs
Prevalence estimates of mental health problems in children and adolescents with intellectual disability: A systematic review and meta-analysis. The Australian and New Zealand journal of psychiatry 54 (10) (2020)
Jonathan Mendoza, Jennepher Anne Downs, Kingsley Wong, Helen Margaret Leonard
Determinants of quality of life in Rett syndrome: new findings on associations with genotype. Journal of medical genetics 58 (9) (2020)
Amy Louise Finlay-Jones, Jacqueline Ann Davis, Amanda O'Donovan, Keerthi Kottampally, Rebecca Anne Ashley, Desiree Silva, Jeneva Lee Ohan, Susan L Prescott, Jennepher Anne Downs
Comparing Web-Based Mindfulness With Loving-Kindness and Compassion Training for Promoting Well-Being in Pregnancy: Protocol for a Three-Arm Pilot Randomized Controlled Trial. JMIR research protocols 9 (10) (2020)
Ifrah Abdullahi, Kingsley Wong, Nicholas de Klerk, Raewyn Mutch, Emma J Glasson, Jennepher Anne Downs, Sarah Cherian, Helen Margaret Leonard
Hospital admissions in children with developmental disabilities from ethnic minority backgrounds. Developmental medicine and child neurology 62 (4) (2019)
Jessica Mackay, Zoe McCallum, Geoffrey R Ambler, Komal Vora, Gillian Nixon, Philip Bergman, Nora Shields, Kate Milner, Nitin Kapur, Patricia Crock, Daan Caudri, Jaqueline Curran, Charles Verge, Chris Seton, Andrew Tai, Elaine Tham, Yassmin Musthaffa, Antony R Lafferty, Greg Blecher, Jessica Harper, Cara Schofield, Aleisha Nielsen, Andrew Wilson, Helen Leonard, Catherine S Choong, Jennepher Anne Downs
Requirements for improving health and well-being of children with Prader-Willi syndrome and their families. Journal of paediatrics and child health 55 (9) (2019)
Amy Epstein, Katrina Williams, Dinah Reddihough, Nada Murphy, Helen Leonard, Andrew Whitehouse, Peter Jacoby, Jennepher Anne Downs
Content validation of the Quality of Life Inventory-Disability. Child: care, health and development 45 (5) (2019)
Jessica MacKay, Helen Leonard, Kingsley Wong, Andrew Wilson, Jennepher Anne Downs
Respiratory morbidity in Rett syndrome: an observational study. Developmental medicine and child neurology 60 (9) (2018)
Michelle Stahlhut, Kylie Hill, Anne-Marie Bisgaard, Anne Kjersgaard Jensen, Michaela Andersen, Helen Leonard, Jennepher Anne Downs
Measurement of Sedentary Behaviors or "Downtime" in Rett Syndrome. Journal of child neurology 32 (12) (2018)
Sharolin Boban, Helen Leonard, Kingsley Wong, Andrew Wilson, Jennepher Anne Downs
Sleep disturbances in Rett syndrome: Impact and management including use of sleep hygiene practices. American journal of medical genetics. Part A 176 (7) (2018)
Jennepher Anne Downs, Peter Jacoby, Helen Leonard, Amy Epstein, Nada Murphy, Elise Davis, Dinah Reddihough, Andrew Whitehouse, Katrina Williams
Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 28 (3) (2018)
Nora Shields, Helen Leonard, Shannon Munteanu, Jennifer Bourke, Polly Lim, Nicholas F Taylor, Jennepher Anne Downs
Parent-reported health-related quality of life of children with Down syndrome: a descriptive study. Developmental medicine and child neurology 60 (4) (2018)
Jennepher Anne Downs, Jenny Rodger, Chen Li, Xuesong Tan, Nan Hu, Kingsley Wong, Nicholas de Klerk, Helen Leonard
Environmental enrichment intervention for Rett syndrome: an individually randomised stepped wedge trial. Orphanet journal of rare diseases 13 (1) (2018)
Jodilee Tangarorang, Helen Leonard, Amy Epstein, Jennepher Anne Downs
A framework for understanding quality of life domains in individuals with the CDKL5 deficiency disorder. American journal of medical genetics. Part A 179 (2) (2018)
E Davis, D Reddihough, N Murphy, A Epstein, S M Reid, A Whitehouse, K Williams, H Leonard, Jennepher Anne Downs
Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life? Child: care, health and development 43 (6) (2017)
Jennepher Anne Downs, Amanda Marie Blackmore, Amy Epstein, Rachel Skoss, Katherine Langdon, Peter Jacoby, Andrew J O Whitehouse, Helen Leonard, Peter W Rowe, Emma J Glasson, null null
The prevalence of mental health disorders and symptoms in children and adolescents with cerebral palsy: a systematic review and meta-analysis. Developmental medicine and child neurology 60 (1) (2017)