change your life - pcori.org · change your life e a part of this important participant-centric...
TRANSCRIPT
Change Your Life
Be a part of this important participant-centric research:
CENA
Your organization name has partnered with Genetic Alliance and nine other disease advocacy organizations in a project called Community Engaged Networks for All (CENA) to create (name your project i.e. XYZ Patient registry)
We are collecting health data, in the form of a highly secure survey located on our Web site, which will allow medical researchers to obtain the data they need to conduct important research on (our condition name).
To change your life and the lives of others with this condition, please take the survey.
Organization Name Organization Address
City, State, Zip Phone
To participate, go to: Website address
USE REFERRAL CODE:
Org Logo
What is the Community-Engaged Network for All (CENA)?
Community-Engaged Network for All (CENA) is one
of 29 projects funded by the Patient Centered
Outcomes Research Institute (PCORI) to form a
new national resource that will accelerate health
research. The new network, which involves millions of
Americans, is called PCORnet. Genetic Alliance leads this
project, which is a collaborative of ten disease advocacy organizations, including (name of our
organization), the University of California San Francisco, the University of California Davis, and
Private Access.
What CENA means for individuals, families and communities You have an opportunity to engage in participant-centric research through (name of your
organization and CENA). Our project is a (name of the project, i.e. patient registry). In other words,
you may share information that is important to you, as well as medical history, all of which will
empower potential researchers to understand various conditions and discover relevant
interventions.
Aggregating information from individuals with (your condition) about their health and their lifestyle
will help advance overall well-being for all. It is important that we gather lived experience, clinical
records, device data, and health information from as many individuals as possible.
About (our condition and organization)