Improving the Quality of Care for Adults With Inflammatory Bowel Disease
Ориентир для пациента и семьи
Простыми словами
Автоматическая сводка по структурированным данным реестра. Она помогает сориентироваться, но не заменяет официальный протокол или оценку врача.
- Что изучают
- Это наблюдательное исследование: исследуемое лечение участникам по протоколу не назначают.
- Кому может быть актуально
- Состояния в реестре: Crohn's Disease, Ulcerative Colitis, Inflammatory Bowel Diseases. Базовые параметры: 18 лет — 99 лет · Все.
- Что важно проверить
- Возраст, диагноз и пол — только базовые ориентиры. Предыдущее лечение, анализы и другие обязательные условия указаны ниже в критериях участия.
- Где проводится
- США
- Следующий шаг
- Сохраните исследование, покажите его лечащему врачу и уточните актуальный статус у исследовательского центра. Расходы, документы и поездка →
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Обзор
Innovative programs exist that suggest that care for people with chronic conditions is optimized when patients and providers have the information they need at the point of care and over time, to engage in shared planning and execution of treatment goals and care plans. This project aims to build an Inflammatory Bowel Disease Learning Health System, a shared information environment, that highlights collaboration among patients, clinicians and care team members, and researchers; for effective use of data for guiding care, value, improvement, and research.
Подробное описание
To demonstrate the impact of an Adult Inflammatory Bowel Disease (IBD) Learning Health System approach the study collaborators will design, build, implement, and evaluate in up to 90 IBD care sites the the following four key components of the IBD Learning Health System: 1) a Health Information Technology (HIT) environment that can "feed-forward" Patient Reported Outcomes (PROs) and clinical data to be used at the point of care and integrated into a registry (IBD Plexus); 2) decision-support dashboards for use by patients and clinicians in real time to coproduce care; 3) meaningful reports for patients and clinicians; and 4) multi-stakeholder collaborative networks for improvement and research.
Prior work from Sweden and the US show that successful uptake of the model can offer important benefits. Patients will be able to use web-based tools to monitor their health and manage their care, securely share data with clinicians in a timely manner, visualize outcomes that matter to them, and compare their results to other people. Clinicians will have new information that can improve their ability to track patient outcomes and costs over time; use PRO data to support pre-visit planning, shared decision-making at the point of care, and post-visit monitoring; and receive comparative performance reports to support quality improvement, public reporting, and professional development. Researchers will benefit by having PROs and cost data added to data registries to support clinical, translational, and comparative effectiveness research.
Первичные конечные точки
- Number of patients enrolled [Срок оценки: annually, up to 5 years]
Вторичные конечные точки (6)
- Proportion of patients in remission [Срок оценки: annually, up to 5 years]
- Proportion of patients on steroids [Срок оценки: annually, up to 5 years]
- Proportion of patients admitted into the Emergency Room [Срок оценки: annually, up to 5 years]
- Proportion of patients hospitalized [Срок оценки: annually, up to 5 years]
- Proportion of patients with anemia [Срок оценки: annually, up to 5 years]
- Proportion of patients with malnutrition [Срок оценки: annually, up to 5 years]
Критерии участия
Критерии включения
- 18 years of age or older
- Diagnosis of Crohn's disease or ulcerative colitis or IBD unclassified
- Accept the terms and conditions of Informed Consent and Authorization
- Affiliated with a participating IBD Qorus site
Критерии исключения
- Inability to provide informed consent
- Study key personnel cannot enroll as a study participant
Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.
Здоровые добровольцы: Нет
Дизайн исследования
- Модель наблюдения
- Другое
Центры проведения
США · 29 центров
- Cedars-Sinai Inflammatory Bowel Disease Center — Los Angeles
- Hoag Digestive Health — Newport Beach
- UC San Diego Health Inflammatory Bowel Disease Center — San Diego
- University of Colorado Health — Denver
- Yale School of Medicine IBD Program — New Haven
- MedStar Georgetown University Hospital Center for Inflammatory Bowel Disease — Washington D.C.
- Gastro Health LLC — Miami
- University of South Florida — Tampa
- … и ещё 21 центр
Идентификаторы
NCT: NCT02791854 · OSP#510516 D16124 · Award#P01193