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Transcript of Partners Presentation
Who are we?
YOU can finally be involved!
Who are the groups helping patients?
Our purpose is to improve the lives of children with rheumatic diseases through research that matters to YOU!
How can I
participate in research?
Answering a survey
on how you feel or what is important
your health care data in an identity-protected way
Suggesting research topics
Helping to design studies
Helping to raise awareness
of studies and their results.
Ensure that your voice is heard!
How PARTNERS was created
Why does this matter to you?
Created and funded by PCORI, PCORnet is a national patient data network consisting of data from large multi-centered health care systems like hospitals, and data from small disease-specific caregivers and patients. The large centers are called Clinical Data Research Networks and the disease-specific are called Patient-Powered Research Networks.
The data is owned and protected by the individual CDRNs and PPRNs.
Patients will be directly involved
in making decisions about research priorities and designing research studies.
Every patient family is an expert in caring
for their child. They know how their children feel and what is important to them.
YOUR voice can
now be heard!
Through the Affordable Care Act (ACA), PCORI was created in 2010
PCORI stands for
Patient-Centered Outcomes Research Institute
Patient-Powered Research Networks
comprise patients and/or caregivers
who are motivated to build an ideal
network and play an active role in
Clinical Data Research networks
involve two or more healthcare
systems, with plans to function as
integrated research network.
PARTNERS is a PPRN
This presentation includes
audio on some slides.
Please make sure your audio is on.
Founded in 2003, Cure JM Foundation is the only organization solely dedicated to supporting Juvenile Myositis (JM) research and improving the lives of families affected by JM. JM, which includes Juvenile Dermatomyositis (JDM) and Juvenile Polymyositis (JPM), is a group of rare and life-threatening autoimmune diseases, with approximately two to four children in a million diagnosed each year. The primary symptoms are weak and painful muscles, skin rash (with JDM) and extreme fatigue, but almost every system of the body can be affected. Cure JM Foundation's mission is to increase awareness, provide support to the families battling
this disease, and fund research into better treatments and
an eventual cure for JM.