About
About the Research Hub
The ICPCN Research Hub is a central place to find children's palliative care research, the people doing it, and practical guidance for doing it well, globally.
What's on it
Five kinds of record share one controlled vocabulary, so they connect to each other: researchers, research groups, current studies, published literature (curated by The Siden Research Team in Zotero), and resources. Alongside these is a community calendar. Because everything shares the same tags, one search box covers everything. See Search.
Almost all content is open without an account, but you do need an account to be listed in the directory yourself, to add a study, to suggest an event, or to message another researcher. Signing in just needs an email address, no password required.
The hub was designed for children's palliative care researchers, by children's palliative care researchers, and we want it to continue to evolve that way. Share any feedback and it will inform what we do next.
How it was created
This hub was co-designed with children's palliative care researchers across the globe, from the very start. We began by speaking with 68 researchers from every WHO region to hear their perspectives on what is needed, what resources are already working, and what they dream for the CPC research field. A global design committee, spanning researchers and clinicians across all WHO regions, then worked through co-design workshops to consider how a hub could meet those needs. The result is a hub built from the ground up, by the field it serves.
ICPCN sincerely thanks the Research Hub Design and Advisory Committees for their effort, commitment, and creativity throughout the development of this global resource.
The Design Committee was comprised of: Dr Rima Saad Rassam, Dr Amrita Sarpal, Dr Gemma Aburn, Dr Gregorio Zuñiga-Villanueva, Dr Ané Buchner, Dr Dorothy Olet, Micha Massaad, Ethan Harned, Dr Krithika Rao, and Dr Kazuto Ueda.
The Advisory Committee was comprised of: Prof Julia Downing, Dr Justin Baker, Dr Hal Siden, Dr Michael McNeil, Dr Eve Namisango, Prof Lorna Fraser, Dr Natalie Bradford, Dr Sergi Navarro, Prof Gayatri Palat, Dr Hazel Gutiérrez, Kira Goodman, Prof Marie Friedel, and Dr Emily Harrop.
Who runs it
ICPCN is the global umbrella organisation for children's palliative care. We are a network of individuals and organisations globally working to improve access to palliative care for the 21 million children worldwide who need it. We aim to achieve our mission by raising awareness of children's palliative care, advocating for the global development of children's palliative care, expanding the evidence-base and sharing expertise, skills and knowledge. Read more about ICPCN and our work on our website: icpcn.org.
How review works
Anyone can create an account, but nothing reaches the public site unreviewed:
- Researcher profiles are checked by ICPCN before they appear in the directory. Editing a profile sends it back for a re-check.
- Group membership: asking to be listed as a member of a research group goes to ICPCN for approval, so a group's member list stays accurate.
- Guides and toolkits published from the workspace wait for ICPCN approval before they appear in the library or on the home page.
Your data and visibility
You choose whether your profile is public, visible only to signed-in researchers, or hidden entirely. Your email address is never displayed. When someone contacts you through the hub, the message is relayed by email and you decide whether to reply. You can export everything the hub holds about you, or delete your account permanently, from your profile. The full detail is in the privacy notice.
Getting help, or reporting something
If something looks wrong (a profile that isn't genuine, a page with content that concerns you, or a group listed incorrectly), please tell ICPCN so it can be looked at. The same route works for questions about your account, the review process, or anything covered by the terms and community code.
Contact us through icpcn.org. If you have an account on the hub, replying to any email the hub has sent you also reaches the team.
New here?
If you're early in your research career or not sure where to begin, there's a step-by-step route through the hub: Start here.