Comprehensive analysis platform to understand, remedy, and eliminate amyotrophic lateral sclerosis (CAPTURE ALS): Study protocol for a Canadian multicenter, multimodal, longitudinal observational study.
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.
Saunders Natalie, Magnussen Claire, Kang HyungMo, Blais Mathieu, Bhinder Harpreet, Pfeffer Gerald, Genuis Shelagh K, Bouvier Liziane, Anand Tanushka, Abou-Haidar Rida, Abrahao Agessandro, Boivin Marie-Noëlle, Bowser Robert, Bubela Tania, Chiappini Julia, Das Samir, Dhanoa Avnit, Dupré Nicolas, Evans Alan, Ferry Nicolas, Frater Yvonne, Genge Angela, Graham Simon J, Greiner Russell, Medina Yasser Iturria, Johnston Wendy S, Jones Kelvin E, Karamchandani Jason, Kriz Jasna, Luth Westerly, Matte Geneviève, Rogaeva Ekaterina, Robertson Janice, Seres Peter, Tam Fred, Taylor David, Tremblay-Desbiens Clémence, Velde Christine Vande, Yunusova Yana, Zinman Lorne, Kalra Sanjay
Аннотация
OBJECTIVES: The main aims of CAPTURE ALS include: (1) to characterize ALS and healthy controls with biosamples and data in order to provide the most comprehensive picture of individuals living with ALS to date; (2) to create a de-identified database and biosample repository linked to detailed clinical information; and (3) to develop and implement an inclusive and transparent participant engagement strategy to be active throughout all stages of CAPTURE ALS.
METHODS/RESULTS: CAPTURE ALS is a prospective, multicenter, observational, longitudinal study. People living with ALS, or a related disease and healthy controls undergo a harmonized protocol including the collection of detailed clinical information, neurological and cognitive examination, speech recording, advanced magnetic resonance imaging, and biosampling. Data and samples are stored in a biobank operating under an open science governance framework. An inclusive and transparent participant engagement strategy was designed and implemented throughout all stages of CAPTURE ALS. Four sites are operating in the consortium with a fifth being onboarded. The target enrollment is 120 affected participants and 50 controls, with the first participant visit having occurred in March 2022. Recruitment is ongoing.
DISCUSSION: CAPTURE ALS is a scalable clinical research platform that connects scientists and patients to facilitate efficient translational research. The unique and deeply phenotyped data and biosamples are a global resource towards the development of biomarkers and understanding ALS biology. This study is registered at clinicaltrials.gov (NCT: NCT05204017).