eprintid: 10144042 rev_number: 7 eprint_status: archive userid: 699 dir: disk0/10/14/40/42 datestamp: 2022-02-22 14:18:56 lastmod: 2022-02-22 14:18:56 status_changed: 2022-02-22 14:18:56 type: article metadata_visibility: show sword_depositor: 699 creators_name: Munblit, Daniel creators_name: Nicholson, Timothy R creators_name: Needham, Dale M creators_name: Seylanova, Nina creators_name: Parr, Callum creators_name: Chen, Jessica creators_name: Kokorina, Alisa creators_name: Sigfrid, Louise creators_name: Buonsenso, Danilo creators_name: Bhatnagar, Shinjini creators_name: Thiruvengadam, Ramachandran creators_name: Parker, Ann M creators_name: Preller, Jacobus creators_name: Avdeev, Sergey creators_name: Klok, Frederikus A creators_name: Tong, Allison creators_name: Diaz, Janet V creators_name: De Groote, Wouter creators_name: Schiess, Nicoline creators_name: Akrami, Athena creators_name: Simpson, Frances creators_name: Olliaro, Piero creators_name: Apfelbacher, Christian creators_name: Rosa, Regis Goulart creators_name: Chevinsky, Jennifer R creators_name: Saydah, Sharon creators_name: Schmitt, Jochen creators_name: Guekht, Alla creators_name: Gorst, Sarah L creators_name: Genuneit, Jon creators_name: Reyes, Luis Felipe creators_name: Asmanov, Alan creators_name: O'Hara, Margaret E creators_name: Scott, Janet T creators_name: Michelen, Melina creators_name: Stavropoulou, Charitini creators_name: Warner, John O creators_name: Herridge, Margaret creators_name: Williamson, Paula R title: Studying the post-COVID-19 condition: research challenges, strategies, and importance of Core Outcome Set development ispublished: pub divisions: C08 divisions: D75 divisions: B02 divisions: UCL keywords: Science & Technology, Life Sciences & Biomedicine, Medicine, General & Internal, General & Internal Medicine, COVID-19, COVID-19 sequalae, Long COVID, Post-acute sequelae of SARS-CoV-2 infection, PASC, Post-COVID-19 condition, Outcomes, Core Outcome Set, RESPIRATORY-FAILURE, SURVIVORS note: This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third-party material in this article are included in the Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ abstract: BACKGROUND: A substantial portion of people with COVID-19 subsequently experience lasting symptoms including fatigue, shortness of breath, and neurological complaints such as cognitive dysfunction many months after acute infection. Emerging evidence suggests that this condition, commonly referred to as long COVID but also known as post-acute sequelae of SARS-CoV-2 infection (PASC) or post-COVID-19 condition, could become a significant global health burden. MAIN TEXT: While the number of studies investigating the post-COVID-19 condition is increasing, there is no agreement on how this new disease should be defined and diagnosed in clinical practice and what relevant outcomes to measure. There is an urgent need to optimise and standardise outcome measures for this important patient group both for clinical services and for research and to allow comparing and pooling of data. CONCLUSIONS: A Core Outcome Set for post-COVID-19 condition should be developed in the shortest time frame possible, for improvement in data quality, harmonisation, and comparability between different geographical locations. We call for a global initiative, involving all relevant partners, including, but not limited to, healthcare professionals, researchers, methodologists, patients, and caregivers. We urge coordinated actions aiming to develop a Core Outcome Set (COS) for post-COVID-19 condition in both the adult and paediatric populations. date: 2022-02-04 date_type: published publisher: BMC official_url: https://doi.org/10.1186/s12916-021-02222-y oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 1939278 doi: 10.1186/s12916-021-02222-y medium: Electronic pii: 10.1186/s12916-021-02222-y lyricists_name: Akrami, Athena lyricists_id: AAKRA52 actors_name: Kalinowski, Damian actors_id: DKALI47 actors_role: owner full_text_status: public publication: BMC Medicine volume: 20 number: 1 article_number: 50 pages: 13 event_location: England citation: Munblit, Daniel; Nicholson, Timothy R; Needham, Dale M; Seylanova, Nina; Parr, Callum; Chen, Jessica; Kokorina, Alisa; ... Williamson, Paula R; + view all <#> Munblit, Daniel; Nicholson, Timothy R; Needham, Dale M; Seylanova, Nina; Parr, Callum; Chen, Jessica; Kokorina, Alisa; Sigfrid, Louise; Buonsenso, Danilo; Bhatnagar, Shinjini; Thiruvengadam, Ramachandran; Parker, Ann M; Preller, Jacobus; Avdeev, Sergey; Klok, Frederikus A; Tong, Allison; Diaz, Janet V; De Groote, Wouter; Schiess, Nicoline; Akrami, Athena; Simpson, Frances; Olliaro, Piero; Apfelbacher, Christian; Rosa, Regis Goulart; Chevinsky, Jennifer R; Saydah, Sharon; Schmitt, Jochen; Guekht, Alla; Gorst, Sarah L; Genuneit, Jon; Reyes, Luis Felipe; Asmanov, Alan; O'Hara, Margaret E; Scott, Janet T; Michelen, Melina; Stavropoulou, Charitini; Warner, John O; Herridge, Margaret; Williamson, Paula R; - view fewer <#> (2022) Studying the post-COVID-19 condition: research challenges, strategies, and importance of Core Outcome Set development. BMC Medicine , 20 (1) , Article 50. 10.1186/s12916-021-02222-y <https://doi.org/10.1186/s12916-021-02222-y>. Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10144042/1/Akrami_Studying%20the%20post-COVID-19%20condition-%20research%20challenges%2C%20strategies%2C%20and%20importance%20of%20Core%20Outcome%20Set%20development_VoR.pdf