McCorkell, L;
S Assaf, G;
E Davis, H;
Wei, H;
Akrami, A;
(2021)
Patient-Led Research Collaborative: embedding patients in the Long COVID narrative.
PAIN Reports
, 6
(1)
, Article e913. 10.1097/PR9.0000000000000913.
Preview |
Text
Patient_Led_Research_Collaborative__embedding.51.pdf - Published Version Download (238kB) | Preview |
Abstract
A large subset of patients with coronavirus disease 2019 (COVID-19) are experiencing symptoms well beyond the claimed 2-week recovery period for mild cases. These long-term sequelae have come to be known as Long COVID. Originating out of a dedicated online support group, a team of patients formed the Patient-Led Research Collaborative and conducted the first research on Long COVID experience and symptoms. This article discusses the history and value of patient-centric and patient-led research; the formation of Patient-Led Research Collaborative as well as key findings to date; and calls for the following: the acknowledgement of Long COVID as an illness, an accurate estimate of the prevalence of Long COVID, publicly available basic symptom management, care, and research to not be limited to those with positive polymerase chain reaction and antibody tests, and aggressive research and investigation into the pathophysiology of symptoms.
| Type: | Article |
|---|---|
| Title: | Patient-Led Research Collaborative: embedding patients in the Long COVID narrative |
| Location: | United States |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1097/PR9.0000000000000913 |
| Publisher version: | https://doi.org/10.1097/PR9.0000000000000913 |
| Language: | English |
| Additional information: | © 2021 International Association for the Study of Pain. This is an open access article distributed under the Creative Commons Attribution License 4.0 (http://creativecommons.org/licenses/by/4.0/). |
| Keywords: | COVID-19, Long COVID, Long haulers, Patient-centered, Patient-centric, Patient-led research, Post COVID-19 syndrome, Post-acute sequelae of SARS-CoV-2 infection |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Life Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Life Sciences > The Sainsbury Wellcome Centre |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10128250 |
Archive Staff Only
 |
View Item |
