Assessment of TREC-Based NBS SCID Reporting Practices for Harmonization of Results and Interpretation: A Global Survey.
Обработка статьи · этапы, ошибки и управление
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Aluri Jahnavi, Gaviglio Amy, Kistler Isaac, Webster Dianne, Pham-Huy Anne, Lawrence Monica G, Yu Joyce E, King Jovanka, Alsuweiti Muatasem, Auzenbaha Madara, Avcin Tadej, Aytekin Caner, Baekvad-Hansen Marie, Chien Yin-Hsiu, Ciznar Peter, Fasth Anders, Förster-Waldl Elisabeth, Gilmour Kimberly, Hagin David, Imai Kohsuke, Kim Yae-Jean, Kurjane Natalja, La Marca Giancarlo, Lempainen Johanna, Leahy Timothy Ronan, Liew Woei Kang, Mahlaoui Nizar, Massaad Michel J, Martin-Nalda Andrea, Masmas Tania Nicole, Pachlopnik-Schmid Jana, Polyakova Ekaterina, Peake Jane, Rivera Sulay, Espinosa-Rosales Francisco J, Rodriguez-Quiroz Francisco, Sediva Anna, Sobh Ali, Soler-Palacin Pere, Stray-Pedersen Asbjørg, Taskinen Mervi, Vorslova Svetlana, Wang Watson, Heimall Jennifer R, Wright Nicola A M, Peng Xiao P, Condino-Neto Antonio, Kobrynski Lisa, Puck Jennifer M, Hauck Fabian, Abraham Roshini S
Аннотация
OBJECTIVE: To assess current NBS SCID practices using a global survey and to report the findings from the phase 1 component.
METHODS: An 18-question survey was distributed to all known SCID screening programs worldwide. Only 1 response per region was analyzed. Examples of international screening algorithms were also solicited and included.
RESULTS: A total of 200 responses were received, of which 80 responses were unique and used for further analysis. Of the 39 non-US countries, 15 (38%) reported national universal screening and 24 (62%) reported regional, pilot, or other screening. Additional questions pertained to methodology and reporting, with particular emphasis on communication of the clinical urgency of an abnormal T-cell receptor excision circle result.
CONCLUSIONS: This global survey confirmed that the approach to NBS SCID varies widely, underscoring the need for harmonization at multiple steps, particularly for reporting and interpretation. This is the first study to capture global NBS SCID practices, and these findings provide the basis for creation of a phase 2 consensus reporting framework, which will be developed by the same SCID Harmonization Committee that created the current study.