Skip to content
DraconiticResearch
Search Sources API
201,818 studies31 sourcesUpdated 49 min ago
Peer-reviewedCC BYFrontiers in pediatrics

Engaging children, adolescents and young adults living with rare diseases as research partners: practical considerations for meaningful involvement

  • Maria Cavaller-Belaubi1
  • Elena-Alexandra Tataru2
  • Donato Bonifazi3
  • Daniel J. O’Connor4
  • Francis P. Crawley5
  • Michelle A. Farrar6
  • Segolene Gaillard7
  • Ainara Gómez Puigvert8
  • Diana Kwast-Hoekstra2
  • Louise Kearney9
  • Samantha Parker2
  • Sabina Schmidt Goldstein-Becerra10
2 more authors
  • Karsten Vanden Wynagert11
  • Anneliene H. Jonker2
11 affiliations
  1. 1EURORDIS-Rare Diseases Europe , ,
  2. 2International Rare Diseases Research Consortium (IRDiRC) , ,
  3. 3TEDDY- European Network of Excellence for Paediatric Clinical Research , ,
  4. 4The Association of the British Pharmaceutical Industry (ABPI) , ,
  5. 5Good Clinical Practice Alliance (GCPA) Europe , ,
  6. 6Department of Neurology, Sydney Children’s Hospitals Network , , ,
  7. 7CIC Inserm, Kids France, CHU-Lyon , ,
  8. 8YPAG Kids Barcelona , ,
  9. 9Fortrea , ,
  10. 10The International Children’s Advisory Network , , ,
  11. 11Ghent University Hospital , ,
Read full textPDFCite

Related

  1. Supporting meaningful contributions of people affected by Parkinson's throughout the research process: Key considerations for inclusive patient and public involvement across the globe
    Marie-Louise Zeissler, Kevin McFarthing, Michèle Bartlett +3
    Journal of Parkinson's DiseasePeer-reviewedCC BY 4.0Full textNeurologyPMC
  2. Treatment of growth hormone deficiency with long-acting growth hormones in children, adolescents and adults: Clinical evidence and practical considerations
    Agnès Linglart, Régis Coutant, Véronique Kerlan +5
    Annales d'Endocrinologie = Annals of EndocrinologyPeer-reviewedCC BYGeneral biologyEndocrinology & metabolismHAL
  3. Enabling meaningful participation and involvement in oncology and palliative care research: insights from two participatory research projects
    Till Neugebauer, Stephanie Knippschild, Veronika Bencheva +5
    BMC Palliative CarePeer-reviewedCC BY 4.0Full textEpidemiology & public healthPMC
  4. Posterior Circulation Stroke in Patients With Dizziness: Diagnostic Challenges and Practical Considerations for Emergency Care
    Andrea L. Klein, Allison N. Seifert, Jonathan A. Edlow +5
    Journal of the American College of Emergency Physicians openPeer-reviewedCC BYFull textNeurologyEurope PMCEurope PMCPMC
  5. Treatment and practical considerations of IgA nephropathy.
    Hanny Sawaf, Junglee Kim, Ali Mehdi +2
    Frontiers in medicinePeer-reviewedCC BYFull textGeneral medicineEurope PMCPMC

Cite

BibTeXRIS
BibTeX
@article{cavallerbelaubi2026engaging,
  title = {{Engaging children, adolescents and young adults living with rare diseases as research partners: practical considerations for meaningful involvement}},
  author = {Maria Cavaller-Belaubi and Elena-Alexandra Tataru and Donato Bonifazi and Daniel J. O’Connor and Francis P. Crawley and Michelle A. Farrar and Segolene Gaillard and Ainara Gómez Puigvert and Diana Kwast-Hoekstra and Louise Kearney and Samantha Parker and Sabina Schmidt Goldstein-Becerra and Karsten Vanden Wynagert and Anneliene H. Jonker},
  journal = {Frontiers in pediatrics},
  year = {2026},
  month = oct,
  url = {https://europepmc.org/article/PMC/PMC13659889},
  note = {CC BY},
}
RIS
TY  - JOUR
TI  - Engaging children, adolescents and young adults living with rare diseases as research partners: practical considerations for meaningful involvement
AU  - Maria Cavaller-Belaubi
AU  - Elena-Alexandra Tataru
AU  - Donato Bonifazi
AU  - Daniel J. O’Connor
AU  - Francis P. Crawley
AU  - Michelle A. Farrar
AU  - Segolene Gaillard
AU  - Ainara Gómez Puigvert
AU  - Diana Kwast-Hoekstra
AU  - Louise Kearney
AU  - Samantha Parker
AU  - Sabina Schmidt Goldstein-Becerra
AU  - Karsten Vanden Wynagert
AU  - Anneliene H. Jonker
PY  - 2026
DA  - 2026/10/16
JO  - Frontiers in pediatrics
UR  - https://europepmc.org/article/PMC/PMC13659889
SN  - 2296-2360
ER  -