Published literature
A global call to action for disability inclusion in health researchAnderson A, Martin R, DeCormier Plosky W, Ned L, Swenor B, Bailie J, Mathias K, Maggo J, Omino M, Russell A, Lawson A, Brown A, Bierer B, Shariq S, Mwifadhi M, Deane K, Philip S, Shepherd V, Walsh N, McHugh G · Nature Medicine · 2025
A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation studyNamisango E, Murtagh F, Bristowe K, Downing J, Powell R, Atieno M, Sandham M, Ali Z, Meiring M, Mwangi-Powell F, Abbas M, Fraser L, Higginson I, Harding R · Health & Quality of Life Outcomes · 2025
Building a culture of engagement at a research centre for childhood disabilityPozniak K, Buchanan F, Cross A, Crowson J, Galuppi B, Grahovac D, Gorter J, Hlyva O, Ketelaar M, Kraus de Camargo O, Krpan Mesic M, Martens R, McCauley D, Nguyen L, Palisano R, Phoenix M, Putterman C, Rosenbaum P, Sprung J, Strohm S, Teplicky R, Thomson D, Wright M · Research Involvement and Engagement · 2021
Children with palliative care needs - the landscape of the nordic countriesWinger A, Holmen H, Birgisdottir D, Lykke C, Lovgren M, Neergaard M, Gronroos M, Kero J, Kristinsdottir O, Petursdottir A, Castor C · BMC Palliative Care · 2024
Early phase study enrollment in Canadian children with cancer near end of life: A retrospective cohort study from Cancer in Young People in CanadaHasan F, Widger K, Punnett A, Rapoport A, Morgenstern D, Cohen-Gogo S, Revon-Riviere G, Abbott L, Guilcher G, Fernandez C, Truong T, Deyell R, Sung L · Cancer · 2025
Enhancing Expert Panel Discussions in Pediatric Palliative Care: Innovative Scenario Development and Summarization With ChatGPT-4Almazyad M, Aljofan F, Abouammoh N, Muaygil R, Malki K, Aljamaan F, Alturki A, Alayed T, Alshehri S, Alrbiaan A, Alsatrawi M, Temsah H, Alsohime F, Alhaboob A, Alabdulhafid M, Jamal A, Alhasan K, Al-Eyadhy A, Temsah M · Cureus · 2023
Ethical Considerations in Ever-Expanding Utilization of ECLS: A Research AgendaClark J, Baden H, Berkman E, Bourget E, Brogan T, Di Gennaro J, Doorenbos A, McMullan D, Roberts J, Turnbull J, Wilfond B, Lewis-Newby M · Front Pediatr · 2022
''If they knew what I thought was important that would help a lot more'': Methods for involving children and young people with life-limiting and life-threatening conditions in development of a paediatric palliative care outcome measureBraybrook D, Coombes L, Roach A, Scott H, Haroardottir D, Bristowe K, Ellis-Smith C, Hills M, Maynard L, Anderson A, Namisango E, Higginson I, Downing J, Bluebond-Langner M, Fraser L, Murtagh F, Harding R · Quality of Life Research · 2022
Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data RepositoryMeghani S, Mooney-Doyle K, Barnato A, Colborn K, Gillette R, Harrison K, Hinds P, Kirilova D, Knafl K, Schulman-Green D, Pollak K, Ritchie C, Kutner J, Karcher S · Journal of Pain and Symptom Management · 2024
Leveraging User Experience Design Expertise in Palliative Care Intervention ScienceHawley C, Alcantra N, Chen C, Feng Y, Lattimore K, Oh S, Rajeeva B, Robinson F, Shenbanjo M, Oslin E, Bogetz J · Journal of Palliative Medicine · 2026
Living With Loss: Study Protocol for a Randomized Controlled Trial Evaluating an Internet-Based Perinatal Bereavement Program for Parents Following Stillbirth and Neonatal DeathLoughnan S, Boyle F, Ellwood D, Crocker S, Lancaster A, Astell C, Dean J, Horey D, Callander E, Jackson C, Shand A, Flenady V · Trials · 2022
Patient, Caregiver, and Clinician Participation in Prioritization of Research Questions in Pediatric Hospital MedicineGill P, Bayliss A, Sozer A, Buchanan F, Breen-Reid K, De Castris-Garcia K, Green M, Quinlan M, Wong N, Frappier S, Cowan K, Chan C, Arafeh D, Anwar M, Macarthur C, Parkin P, Cohen E, Mahant S, Canadian Pediatric Inpatient Research Network (PIRN) · JAMA Network Open · 2022
Pediatric Oncology Clinical Trials and Collaborative Research in Africa: Current Landscape and Future Perspectivesvan Heerden J, Zaghloul M, Neven A, de Rojas T, Geel J, Patte C, Balagadde-Kambugu J, Hesseling P, Tchintseme F, Bouffet E, Hessissen L · JCO global oncology · 2020
Research priorities for childhood chronic conditions: a workshop reportLopez-Vargas P, Tong A, Crowe S, Alexander S, Caldwell P, Campbell D, Couper J, Davidson A, De S, Fitzgerald D, Haddad S, Hill S, Howell M, Jaffe A, James L, Ju A, Manera K, McKenzie A, Morrow A, Odgers H, Pinkerton R, Ralph A, Richmond P, Shaw P, Singh-Grewal D, van Zwieten A, Wake M, Craig J · Archives of Disease in Childhood · 2018
Research Priorities in Pediatric Palliative CareBaker J, Levine D, Hinds P, Weaver M, Cunningham M, Johnson L, Anghelescu D, Mandrell B, Gibson D, Jones B, Wolfe J, Feudtner C, Friebert S, Carter B, Kane J · Journal of Pediatrics · 2015
Too vulnerable? Successful practices for conducting research with children and young people who have life-limiting or life-threatening illnessNamisango E, Friedel M, Yurdusen S, Alrjoub W, Braybrook D, Alarjeh G, Roach A, Boufkhed S, Farsides B, Coombes L, Harding R · Palliative medicine · 2025
Translating Research to Action: The Development of a Pediatric Palliative Cancer Care Advocacy Tool in EurasiaEhrlich B, Yakimkova T, Batmunkh T, Mishkova V, Movsisyan N, Kirgizov K, Borisevich M, Kizyma R, Graetz D, McNeil M, Vinitsky A, Smelov V, Corbex M, Lam C, Kaye E, Baker J, Agulnik A · JCO Glob Oncol · 2022
Use of Patient-Reported Outcomes Measurement Information System Pediatric Measures as Clinical Trial Endpoints: Experience from a Multicenter Pragmatic Trial in Children with Crohn’s DiseaseMiller T, Schuchard J, Carle A, Forrest C, Kappelman M, Adler J, Ammoury R, Bass D, Bass J, Benkov K, Bousvaros A, Boyle B, Cabrera J, Colletti R, Dorsey J, Ebach D, Firestine A, Gulati A, Hoffenberg E, Jester T, Kaplan J, Kugathasan S, Kusek M, Leibowitz I, Linville T, Margolis P, Minar P, Rios Z, Moses J, Palomo P, Pappa H, Pashankar D, Saeed S, Samson C, Sandberg K, Steiner S, Strople J, Sullivan J, Tung J, Wali P · The Journal of Pediatrics · 2021
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