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Establishing an International Collaboration to Disseminate eHealth Disease-Management Tools for People Living with Scleroderma

Establishing an International Collaboration to Disseminate eHealth Disease-Management Tools for People Living with Scleroderma
建立国际合作，为硬皮病患者传播电子健康疾病管理工具
批准号：
372920
负责人：
Thombs Brett D
金额：
$0.73万
依托单位：
CIUSSS de Centre-Ouest-de-l'Ile-de-Montral-Jewish General
依托单位国家：
加拿大
项目类别：
Miscellaneous Programs
财政年份：
2017
资助国家：
加拿大
项目状态：
已结题
起止时间：
2017-08-01 至 2018-08-01
来源：
https://webapps.cihr-irsc.gc.ca/decisions/p/project_details.html?applId=372920&lang=en
关键词：
Dissemination Knowledge Translation Patient Participation Planning Rare Diseases Scleroderma Self-Management Systemic Sclerosis

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中文摘要
翻译
硬皮病是一种罕见的自身免疫性疾病，其特征是皮肤和内部器官增厚和硬化。硬皮病的负担和对生活质量的影响很大。心理社会、教育和康复干预可以
英文摘要
Scleroderma is a rare autoimmune disease that is characterized by thickening and hardening of the skin and internal organs. The burden and impact on quality of life of scleroderma is high. Psychosocial, educational, and rehabilitation interventions could
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会议论文
Engaging Patients to Plan the Next 10 Years of the Scleroderma Patient-centered Intervention Network (SPIN): Building on a Successful Patient-Researcher Collaboration
Engaging Patients to Develop a Systemic Program of Patient Engagement in Musculoskeletal and Rare Disease Research: Putting Patients First
Towards Understanding Pain Sources, Patterns, and Barriers to Effective Management in Systemic Sclerosis: A Patient-Researcher Partnership
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