A genetic study of angiosarcoma designed through an online patient-partnership model overcomes key barriers in rare-disease research and provides indicators of clinical approaches.
This is a preview of subscription content, log in via an institution to check access.
References
INVOLVE. Briefing notes for researchers: involving the public in NHS, public health and social care research (INVOLVE, Eastleigh, UK, 2012).
National Institute for Health Research. Going the Extra Mile: Improving the nation’s health and wellbeing through public involvement in research (National Institute for Health Research, 2015).
Patient-Centered Outcomes Research Institute. Engage with Us https://www.pcori.org/engagement/engage-us (January 2020).
Painter, C.A. et al. Nat. Med. https://doi.org/10.1038/s41591-019-0749-z (2020).
Oliver, S. R. et al. Health Expect. 11, 72–84 (2008).
Brett, J. et al. Patient 7, 387–395 (2014).
Brett, J. et al. Health Expect. 17, 637–650 (2012).
Mockford, C., Staniszewska, S., Griffiths, F. & Herron-Marx, S. Int. J. Qual. Health Care 24, 28–38 (2012).
Wilson, P. et al. Health Services and Delivery Research No. 3.38 (NIHR Journals Library, Southampton, UK, 2015).
Hickey, G. et al. NIHR INVOLVE https://www.invo.org.uk/posttypepublication/guidance-on-co-producing-a-research-project/ (2018).
Staniszewska, S. et al. Br. Med. J. 358, j3453 (2017).
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Competing interests
The author declares no competing interests.
Rights and permissions
About this article
Cite this article
Staniszewka, S. A patient–researcher partnership for rare cancer research. Nat Med 26, 164–165 (2020). https://doi.org/10.1038/s41591-020-0766-y
Published:
Issue Date:
DOI: https://doi.org/10.1038/s41591-020-0766-y
- Springer Nature America, Inc.
This article is cited by
-
Considerations for patient and public involvement and engagement in health research
Nature Medicine (2023)