Webinar TSRX and the Future of Turner Syndrome Research

Overview of the Turner Syndrome Research Exchange Clinical Registry

What You Will Learn:
In this presentation you will learn what patients can do to further Turner syndrome research. It will provide a general understanding of the patient reported outcomes process and the benefits of amplifying the patient voice in this manner.

    • Why the TSRX PIN is important to the future of Turner syndrome research
    • Patient’s role in patient centered research
    • Patient’s benefit for contributing to the TSRX PIN
    • What you will need for the TSRX PIN
    • How to set up a PIN, take surveys, update information, etc.
    • Information and your privacy
    • Q & A

Who Should Attend:
Patients, caregivers, allied health professionals, clinical researchers, health administrators, and policy makers.

Webinar Link:
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Cost:
If you cannot make a donation, add $1.00 paid by check to process your request. Note, you will not be charged and you will receive access to the webinar. If you can give today, please do so. Our mission needs your support.

About the Presenter:
Patient Data Network – Phenomics Invitae.com
JoAnne Vidal, PM of the Invitae Patient Insights Network programs, will provide an overview of the TSRX registration process, the importance of contributing, demonstrate the survey experience and site features that the TSF community may find useful.

Donations and sponsorships make learning events such as this WE LEARN webinar activity provided freely and accessible to everyone. Please support today!

Webinar TSRX
TSRX.US a Global Registry for Turner Syndrome

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