Now, more than ever, we need you to become involved with research about your disease. Without the participation of patients and parents, research cannot advance toward a cure.
Specifically, inJuvenile Arthritis (JA)父母和患者在研究中扮演着重要的角色——当涉及到对你或你的孩子的健康和日常生活质量重要的问题时，你是专家。
What role can you play in research to find a cure?
At one time, the only role that patients played in research was being a subject. While that important role still exists, researchers are now asking that patients become research partners.
这是什么意思?这意味着您和/或您的孩子实际上成为研究研究团队的正式成员，为研究人员提供了研究主题和研究设计方面非常需要的视角和想法。例如，父母研究伙伴可能会帮助起草用于招募家庭参与研究的材料，因为父母知道第一手资料，什么会使一项研究感到有价值和有吸引力。最重要的是，你是唯一一个可以告诉研究人员日常生活中对你和/或你的孩子重要的事情的人。
Why should I become a research partner or a research participant? And what’s the difference?
当涉及到对你孩子的健康和日常生活质量重要的问题时，你是专家。您可以帮助研究人员优先考虑哪些研究应该进行，并帮助他们提出和回答正确的问题。研究人员寻求并尊重您的意见。
Becoming a research participant or “subject” is different than being a partner in research, but both are very important. By being a study participant, you can positively impact your health (or the health of your child) and the care you receive. Evidence is available that shows that patients who take part in research receive better care for their condition because of their involvement.
How do I learn more?
Thanks to a two-year Patient Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award, the Arthritis Foundation has created aseries of educational videosto help make patients and families aware of the opportunities available through involvement in research, whether as patient participants or as patient/family partners. The curriculum was developed with clinicians, researchers, patient/families and presented during the parent program sessions at bothJA Conference locations在2016年和2017年，并在每次演讲后根据与会者的反馈进行了完善。PCORI奖使56个符合条件的家庭获得额外的旅行奖学金，参加2016年和2017年的JA会议，并参与“研究:有一个角色给你!”培训的地方。作为最终产品，我们开发了一个基于共同制作的课程的视频，现在可以更广泛地传播，以教育和授权患者/家庭参与研究。
The training, designed to answer your questions about taking part in research, canbe viewed here(to be viewed in order):
- Introduction – Living With Chronic Disease:An overview of research projects with patient partners.
- Chapter 1 – Research as a Tool:Learn about the importance of patients/subjects, research partners and patient reported outcomes. Find out why patients should get involved in different parts of the research process.
- Chapter 2 – Joining Research as a Study Participant:Find out more about the different types of research, the rules that protect you as a subject, and the benefits of volunteering in a study.
- Chapter 3 – Joining Research as a Patient or Parent Partner:Learn how to be part of a “team research”, what it means for patients and how to get involved.
We hope you get involved after watching our videos! To find out more:
- Sign up to become a member of PARTNERS, our patient-powered research networks, to become a research partner and for more information on JA-focused research.
- Check out research opportunities on theArthritis FoundationandChildhood Arthritis and Rheumatology Research Alliance (CARRA)websites.
- 向你的医生和/或护理团队询问你可能参与的研究。