Cerebral palsy
Cleft palate
Congenital abnormalities
Congenital diaphragmatic hernia
Congenital heart disease
Congenital melanocytic naevi
Congenital Pulmonary Airway Malformation (CPAM)
Congenital talipes equinovarus (CTEV)
Fetal spina bifida
Spina bifida (SB)
Both
The below search results are separated into core outcome set studies and other relevant studies. Core outcome set studies are ordered by the date added to the database. Other relevant studies are ordered by study type using the COMET study type classification hierarchy which can be viewed here. Studies can be displayed using a different sort order by downloading the search results using the link below.
Papers that are all part of one study are represented by one colour block, with linked studies displayed underneath the main paper in a smaller font size.
Your search returned 43 results for 24 Core Outcome Set studies.
Your search returned 11 results for other studies. To see those other studies click here.
| Disease Name | Study Title | Year | Study Type | Disease Category | Authors | |
|---|---|---|---|---|---|---|
| - Congenital heart disease | Development and Validation of a Core Outcome Set for Adolescents and Young Adults with Congenital Heart Diseases (AYAs-CHD COS) addressing Transition to Adult Care: A Delphi Study | Ongoing |
- COS for clinical trials or clinical research - COS for practice |
- Heart & circulation | Angileri S., PhD(s) RN, Department of Biomedicine and Prevention, University of Rome Tor Vergata, Rome, Italy Maga G., PhD, RM, Department of Public ... | |
| - Cerebral palsy | Development of a core outcome set for selective dorsal rhizotomy in ambulant children and young people with cerebral palsy | Ongoing | - COS for clinical trials or clinical research | - Child health | Raghad Alnujayban Supervisors: Dr. Tim Theologis and Dr. Philippa Nicolson. Affiliation: University of Oxford. | |
| - Cerebral palsy | Outcomes of selective dorsal rhizotomy in ambulatory children and young people with cerebral palsy: A scoping review | 2026 | - Systematic review of outcomes measured in trials |
- Child health - Neurology |
Deepti Chugh, Eleanor Main, Gillian Waite, Lucy Alderson, Kristian Aquilina, Cherry Kilbride, Tim Theologis, Hortensia Gimeno | |
|
- Cerebral palsy - Upper Limb Spasticity |
Development of a Core Outcome Set for Paediatric Upper Limb Spasticity; A Scoping Review and Delphi Process | Ongoing |
- COS for clinical trials or clinical research - COS for practice |
- Orthopaedics & trauma | Sara Dorman - Principle Investigator Alison Liddle - Investigator Lizzie Swaby - University of Sheffield Katie Risedale - University of Sheffield | |
| - Cerebral palsy | Core Outcome Sets to physical therapy interventions by telehealth in children with Cerebral Palsy | Ongoing |
- COS for clinical trials or clinical research - COS for practice |
- Child health | Isabella Saraiva Christovão1*, Paula Silva de Carvalho Chagas2, Hércules Ribeiro Leite1, Ana Cristina Resende Camargos1 1 Graduate Program in Rehab... | |
| - Cerebral palsy | Outcomes and standardized tools in telehealth physical therapy for children with cerebral palsy: A scoping review using the ICF framework | 2025 | - Systematic review of outcomes measured in trials | - Child health | Isabella S. Christovão, Paula S. de C. Chagas, Ana Alice V. Aniceto, Daiane A. de O. Bettoni, Lorena C. Ferreira, Hércules R. Leite, Ana Cristina R. C... | |
|
- Cerebral palsy - Respiratory diseases |
Core outcome set and measures of chest health in children and young people with cerebral palsy in the community setting: CHESTI study | Ongoing |
- COS for clinical trials or clinical research - COS for practice |
- Child health | Mrs Rachel Knight Lozano (Principal Investigator), UNiversity of Plymouth Professor Jos Latour (Supervisor), University of Plymouth Dr Harriet Shann... | |
|
- Cerebral palsy - Respiratory diseases |
Community-based respiratory health measures in children and young people with cerebral palsy: A scoping review | 2024 | - Systematic review of outcomes measured in trials | - Child health | Rachel Knight Lozano, Harriet Shannon, Jonathan Gilby, Sian Goddard, Leanne Turner, Jonathan Marsden | |
| - Cerebral palsy | Establishment of core outcome set for acupuncture treatment of cerebral palsy | Ongoing | - COS for clinical trials or clinical research | - Neurology | major investigator:Hu Zhiruo Chief supervisor:Tian Jinhui affiliation:The center for Evidence-based Medicine, Lanzhou University | |
|
- Spina bifida (SB) - Myelomeningocele |
Developing a Core Outcomes Set for the Assessment of Related Orthopaedic Involvement in Patients with Myelomeningocele | Ongoing |
- COS for clinical trials or clinical research - COS for practice |
- Orthopaedics & trauma | Principal Investigators: Miss Yael Gelfer, St. George's Healthcare NHS Trust, London, UK; and St George’s University of London, London, UK Miss Anna... | |
| - Congenital Pulmonary Airway Malformation (CPAM) | Defining a Core Outcome Set for paediatric Congenital Pulmonary Airway Malformation (CPAM) patients | Completed – pending publication |
- COS for clinical trials or clinical research - COS for practice - Recommendations for outcome measures (measurement/how) |
- Lungs & airways | J.M. Schnater MD PhD S.M. Hermelijn MD, Erasmus Medical Center - Sophia Children's Hospital, Rotterdam | |
| - Congenital Pulmonary Airway Malformation (CPAM) | The Management of Asymptomatic Congenital Pulmonary Airway Malformation: Results of a European Delphi Survey | 2022 |
- COS for clinical trials or clinical research - COS for practice |
- Lungs & airways | Casper M. Kersten, Sergei M. Hermelijn, Dhanya Mullassery, Nagarajan Muthialu, Nazan Cobanoglu, Silvia Gartner, Pietro Bagolan, Carmen Mesas Burgos, A... | |
|
- Fetal myelomeningocele - Fetal spina bifida |
Development of a core outcome set for fetal interventions for myelomeningocele (spina bifida) | Ongoing |
- COS for clinical trials or clinical research - COS for practice |
- Pregnancy & childbirth | Tim Van Mieghem Maternal Fetal Medicine Specialist Mount Sinai Hospital, Toronto, Canada Clare Whitehead Maternal Fetal Medicine Fellow Mount S... | |
| - Cerebral palsy | Multi-morbidity risk assessment and prevention in adolescents and adults with cerebral palsy: establishing a core outcome set for clinical practice | Completed – pending publication |
- COS for clinical trials or clinical research - COS for practice - Recommendations for outcome measures (measurement/how) |
- Child health - Neurology |
Jan Willem Gorter, MD, PhD, McMaster University. Hamilton, ON. Canada - Principal Investigator Marij Roebroeck, PhD, Erasmus University Medical Cente... | |
| - Cerebral palsy | Focus on Risk Factors for Cardiometabolic Disease in Cerebral Palsy: Toward a Core Set of Outcome Measurement Instruments | 2019 | - Recommendations for outcome measures (measurement/how) |
- Child health - Neurology |
Benner, J. L. McPhee, P. G. Gorter, J. W. Hurvitz, E. A. Peterson, M. D. Obeid, J. Wright, M. Balemans, A. C. J. Verschuren, O. van den Berg-Emons, R.... | |
| - Congenital melanocytic naevi | The Outcome measures for COngenital MElanocytic Naevi (OCOMEN) | Ongoing |
- COS for clinical trials or clinical research - COS for practice - Recommendations for outcome measures (measurement/how) |
- Skin | N. den Hertog Prof. Dr. S.G.M.A. Pasmans Dr. M.M. Pleumeekers Dr. O. Lapid Prof. dr. P.I. Spuls Dr. A. Wolkerstorfer Prof. Dr. J. Kottner C.J.A... | |
| Outcomes and measurement instruments used in congenital melanocytic naevi research: A systematic review | 2020 | Fledderus, A. C. Franke, C. J. J. Eggen, C. A. M. van Etten-Jamaludin, F. S. van der Horst, C. M. A. M. Brinkmann, S. J. H. Spuls, P. I. | ||||
| - Congenital melanocytic naevi | Development of an international core domain set for medium, large and giant congenital melanocytic nevi as a first step towards a core outcome set for clinical practice and research | 2020 |
- COS for clinical trials or clinical research - COS for practice |
- Skin | W. Oei A.C. Fledderus I. Korfage C.A.M. Eggen C.M.A.M. van der Horst P.I. Spuls S.J.H. Brinkmann A. Wolkerstorfer M. van Kessel S. Pasmans | |
| - Congenital melanocytic naevi | Domains and outcomes of the core outcome set of congenital melanocytic naevi for clinical practice and research (the OCOMEN project): part 2 | 2021 |
- COS for clinical trials or clinical research - COS for practice |
- Skin | A C Fledderus, S G M A Pasmans, A Wolkerstorfer, W Oei, H C Etchevers, M S van Kessel, C M A M van der Horst, P I Spuls | |
| - Congenital melanocytic naevi | Measurement instruments for the core outcome set of congenital melanocytic naevi and an assessment of the measurement properties according to COSMIN: a systematic review | 2023 | - Systematic review of outcome measures/measurement instruments | - Skin | A.C. Fledderus, T. Booma, C.M. Legematea, C.M.A.M. van der Horst, P.I. Spuls | |
| - Congenital abnormalities | Developing a Minimum Data Set for a congenital abnormalities surveillance programme in Rwanda – a modified e-Delphi consensus study [version 2; peer review: 1 approved with reservations, 1 not approved] | Completed – pending publication |
- COS for registry - Minimum dataset for registries |
- Genetic disorders | Annette Uwineza, Aline Muhorakeye, Janvier Hitayezu, Peter Thomas Cartledge | |
|
- Cerebral palsy - Chronic pain |
A core outcome set to assess chronic pain interference and impact on emotional functioning for children and young people with cerebral palsy | 2025 |
- COS for clinical trials or clinical research - COS for practice |
- Anaesthesia & pain control - Developmental, psychosocial, & learning problems |
Nadine L. Smith, Noula Gibson, Christine Imms, Ashleigh L. Thornton, Adrienne R. Harvey | |
|
- Cerebral palsy - Chronic pain |
A pilot implementation study of a chronic pain core outcome set and decision tree for children and young people with cerebral palsy | 2025 | - COS methods research |
- Anaesthesia & pain control - Developmental, psychosocial, & learning problems |
Nadine L Smith, Noula Gibson, Christine Imms, Ashleigh L Thornton, Adrienne R Harvey | |
| - Cleft palate | Development of a Core Outcome Set for the Audit of Cleft Care in Malaysia | 2025 | - COS for practice |
- Child health - Ear, nose, & throat |
Al Imran Shahrul, Nik Mukhriz Nik Mustapha, Mas Suryalis Ahmad, O. P. Kharbanda, and Aida Nur Ashikin Abd Rahman | |
| - Congenital diaphragmatic hernia | Core outcome set for perinatal interventions for congenital diaphragmatic hernia | 2023 | - COS for clinical trials or clinical research | - Pregnancy & childbirth | S. Vergote, F. R. De Bie, J. M. N. Duffy, J. Bosteels, A. Benachi, B. Power, F. Meijer, H. L. Hedrick, C. J. Fernandes, I. K. M. Reiss, P. De Coppi, K... | |
|
- Clubfoot - Congenital talipes equinovarus (CTEV) |
The outcomes of idiopathic congenital talipes equinovarus: a core outcome set for research and treatment | 2022 | - COS for clinical trials or clinical research | - Orthopaedics & trauma | Principal Investigator: Yael Gelfer, St. George's Healthcare NHS Trust, London, UK; and St George’s University of London, London, UK Contributors: ... | |
|
- Congenital talipes equinovarus (CTEV) - Clubfoot |
A systematic review of reported outcomes following Ponseti correction of idiopathic club foot | 2020 | - Systematic review of outcomes measured in trials | - Orthopaedics & trauma | Yael Gelfer, Katie Patterson Hughes, Andreas Fontalis, Shlomo Wientroub, Deborah M. Eastwood | |
| - Cerebral palsy | A core outcome set for lower limb orthopaedic surgery for children with cerebral palsy: An international multi-stakeholder consensus study | 2022 |
- COS for clinical trials or clinical research - COS for practice |
- Child health | Hajar Almoajil,Sally Hopewell,Helen Dawes,Francine Toye,Tim Theologis | |
| - Cerebral palsy | Patients’ and parents’ views about lower limb orthopaedic surgery for ambulant children and young people with cerebral palsy: a qualitative evidence synthesis | 2020 | - Patient perspectives | - Child health | Hajar Almoajil, Tim Theologis, Helen Dawes, Jackie Parsonage, Jo Pierce, Sally Hopewell, Francine Toye | |
| - Cerebral palsy | Outcomes of importance to children and young adults with cerebral palsy, their parents and health professionals following lower limb orthopaedic surgery: A qualitative study to inform a Core Outcome Set | 2022 | - Patient perspectives | - Child health | Hajar Almoajil, Francine Toye, Helen Dawes, Jo Pierce, Andrew Meaney, Aziz Baklouti, Lara Poverini, Sally Hopewell, Tim Theologis | |
| - Cerebral palsy | Exploring the factors that influence stakeholders’ expectations and subsequent perception of lower limb orthopaedic surgical outcomes for ambulant children with cerebral palsy – a qualitative study | 2022 | - Patient perspectives | - Child health | Hajar Almoajil, Tim Theologis, Helen Dawes, Jo Pierce, Andrew Meaney, Aziz Baklouti, Lara Poverini, Sally Hopewell & Francine Toye | |
| - Cerebral palsy | Development of a set of core outcome measures for ambulant children with cerebral palsy after lower limb orthopaedic surgery | 2025 | - Recommendations for outcome measures (measurement/how) | - Child health | Hajar Almoajil, Sally Hopewell, Helen Dawes, Francine Toye, Rakhshan Kamran, Tim Theologis | |
| - Cerebral palsy | Outcome domains and measures after lower limb orthopaedic surgery for ambulant children with cerebral palsy: an updated scoping review | 2020 | - Systematic review of outcomes measured in trials | - Child health | Hajar Almoajil Nichola Wilson Tim Theologis Sally Hopewell Francine Toye Helen Dawes | |
| - Congenital heart disease | Development of an international standard set of clinical and patient-reported outcomes for children and adults with congenital heart disease: a report from the International Consortium for Health Outcomes Measurement Congenital Heart Disease Working Group | 2021 | - COS for practice | - Heart & circulation | Kevin Hummel, Sarah Whittaker, Nick Sillett, Amy Basken, Malin Berghammer, Tomás Chalela, Julie Chauhan, Luis Antonio Garcia, Babar Hasan, Kathy Jenki... | |
| - Congenital melanocytic naevi | Development of an international core domain set for medium, large and giant congenital melanocytic naevi as a first step towards a core outcome set for clinical practice and research | 2020 | - COS for practice | - Skin | W. Oei, A. C. Fledderus, P. I. Spuls, C. A. M. Eggen, J. Kottner, C. M. A. M. van der Horst, A. Wolkerstorfer, M. S. van Kessel, S. Krengel, H. C. Etc... | |
| - Cleft palate | A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care | 2017 | - COS for practice |
- Child health - Ear, nose, & throat |
Alexander C. Allori, M.D., M.P.H., Thomas Kelley, M.D., M.B.A., John G. Meara, M.D., D.M.D., M.B.A., Asteria Albert, M.D., Krishnamurthy Bonanthaya, M... | |
|
- Cleft palate - Otitis media |
The Importance of Integration of Stakeholder Views in Core Outcome Set Development: Otitis Media with Effusion in Children with Cleft Palate | 2015 |
- Systematic review of outcomes measured in trials - Patient perspectives - COS for clinical trials or clinical research |
- Child health - Ear, nose, & throat |
Nicola L. Harman, Iain A. Bruce, Jamie J. Kirkham, Stephanie Tierney, Peter Callery, Kevin O'Brien, Alex M. D. Bennett, Raouf Chorbachi, Per N. Hall, ... | |
|
- Cleft palate - Otitis media |
The management of otitis media with effusion in children with cleft palate (mOMEnt): A feasibility study and economic evaluation | 2015 | - COS for clinical trials or clinical research |
- Child health - Ear, nose, & throat |
Iain Bruce, Nicola Harman, Paula Williamson, Stephanie Tierney, Peter Callery, Syed Mohiuddin, Katherine Payne, Elisabeth Fenwick, Jamie Kirkham, Kevi... | |
|
- Cleft palate - Otitis media |
Otitis Media With Effusion: Experiences of Children With Cleft Palate and Their Parents | 2013 | - Patient perspectives |
- Child health - Ear, nose, & throat |
Tierney, Stephanie O'Brien, Kevin Harman, Nicola L. Sharma, Ravi K. Madden, Colm Callery, Peter | |
|
- Cleft palate - Otitis media |
Risks and benefits of ventilation tubes and hearing aids from the perspective of parents of children with cleft palate | 2013 | - Patient perspectives |
- Child health - Ear, nose, & throat |
Tierney, S. O'Brien, K. Harman, N. L. Madden, C. Sharma, R. K. Callery, P. | |
| - Cerebral palsy | Guidelines for future research in constraint-induced movement therapy for children with unilateral cerebral palsy: an expert consensus | 2014 | - COS for clinical trials or clinical research | - Neurology | Eliasson, Ann Christin Krumlinde-Sundholm, Lena Gordon, Andrew M. Feys, Hilde Klingels, Katrijn Aarts, Pauline B. M. Rameckers, Eugene Autti-Ramo, Ilo... | |
|
- Osteogenesis imperfecta (OI) - Achondroplasia - Spina bifida (SB) - Cerebral palsy - Haemophilia/hemophilia and other bleeding disorders - Juvenile idiopathic arthritis (JIA) - Cancer - Cystic fibrosis |
The Utrecht approach to exercise in chronic childhood conditions: the decade in review | 2011 |
- Recommendations for outcome measures (measurement/how) - COS for clinical trials or clinical research |
- Other | van Brussel, Marco van der Net, Janjaap Hulzebos, Erik Helders, Paul J. M. Takken, Tim | |
| - Cerebral palsy | Measuring what matters in cerebral palsy: a breadth of important domains and outcome measures | 2009 |
- COS for clinical trials or clinical research - COS for practice |
- Neurology | Vargus-Adams, Jilda N. Martin, Lauren K. |
Your search returned: 11 results
| Disease Name | Study Title | Year | Study Type | Disease Category | Authors | |
|---|---|---|---|---|---|---|
| - Cerebral palsy | Core Outcome Set for Adults with Cerebral Palsy: Integrating Different Perspectives Towards a Common Goal | Ongoing | - Patient perspectives | - Neurology | Nina Matos, Polytechnic Institute of Setúbal – Principal investigator; Cláudia Maria Lima Costa, Polytechnic Institute of Setúbal – Co-supervisor; S... | |
|
- Cerebral palsy - Chronic pain |
A core outcome set of chronic pain assessment tools for young people with cerebral palsy: consensus from key stakeholders | Ongoing | - Recommendations for outcome measures (measurement/how) |
- Anaesthesia & pain control - Developmental, psychosocial, & learning problems |
Noula Gibson: Kids Rehab WA, Perth Children’s Hospital, Nedlands, WA, Australia; Department of Physiotherapy, Perth Children’s Hospital, Nedlands; WA,... | |
| - Cerebral palsy | Clinical functional outcome measures for children with cerebral palsy after gait corrective orthopaedic surgery: A scoping review | 2023 | - Systematic review of outcome measures/measurement instruments | - Neurology | Maxine M Fong, Noula Gibson, Sian A Williams, Lynn Jensen | |
| - Cerebral palsy | Are We Getting It Right? A Scoping Review of Outcomes Reported in Cell Therapy Clinical Studies for Cerebral Palsy | 2022 |
- Systematic review of outcome measures/measurement instruments - Systematic review of outcomes measured in trials |
- Neurology | Megan Finch-Edmondson, Madison C B Paton, Ingrid Honan, Petra Karlsson, Candice Stephenson, Darryl Chiu, Sarah Reedman, Alexandra R Griffin, Catherine... | |
|
- Cleft palate - Obstructive sleep disordered breathing |
Parental Experience of Sleep-Disordered Breathing in Infants With Cleft Palate: Comparing Parental and Clinical Priorities | 2018 |
- Patient perspectives - Systematic review of outcomes measured in trials |
- Child health - Ear, nose, & throat |
Karen Davies, PhD Yin-Ling Lin, PhD Anne-Marie Glenny, PhD Peter Callery, BA (Hons), RN, MSc, PhD Iain A. Bruce, MD, FRCS (ORL-HNS) | |
| - Cleft palate | A scoping review of outcomes related to orthodontic treatment measured in cleft lip and palate. | 2017 | - Systematic review of outcomes measured in trials | - Dentistry & oral health | Tsichlaki, O'Brien, Johal, Fleming | |
| - Cerebral palsy | Multiprofessional evaluation in clinical practice: establishing a core set of outcome measures for children with cerebral palsy | 2017 | - ICF core set |
- Child health - Developmental, psychosocial, & learning problems - Neurology |
Helena Mäenpää, Ilona Autti-Rämö, Tarja Varho, Wivi Forsten, Leena Haataja | |
| - Cerebral palsy | Infants at risk of cerebral palsy: a systematic review of outcomes used in Cochrane studies of pregnancy, childbirth and neonatology | 2015 | - Systematic review of outcomes measured in trials |
- Child health - Neurology |
Hines, M. Swinburn, K. McIntyre, S. Novak, I. Badawi, N. | |
| - Cerebral palsy | International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy: a consensus meeting | 2015 | - ICF core set | - Neurology | VERONICA SCHIARITI, MELISSA SELB, ALARCOS CIEZA, MAUREEN O’DONNELL | |
| - Cerebral palsy | Consulting parents about the design of a randomized controlled trial of osteopathy for children with cerebral palsy | 2011 | - Patient perspectives | - Neurology | Edwards, V. Wyatt, K. Logan, S. Britten, N. | |
| - Cerebral palsy | Quality of reporting of randomized, controlled trials in cerebral palsy | 2006 | - Commentary | - Neurology | Anttila, Heidi and Antti Malmivaara, Regina Kunz, Ilona Autti-Ramo, Marjukka Makela |