
CSRF - Cushing's Support & Research Foundation - Cushing's Syndrome Resources
43271267
Plymouth, MA 02360 USA
csrf.net
csrfnet
CSRF.net
2318569
Podobné organizace
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Want to learn more about the Global Patient Registry we are building, from the team that built and manages the platform? Our understanding of the value and impact of a patient-led registry took some time and developed by learning from others how they build and use them. NORD will host a zoom meeting on June 12 at 4pm EST to talk about their Living Rare Study, which is one of many registries they host on the same platform we use - IAMRARE. This study looks at longitudinal data (collected at intervals over time) related to: -Access to healthcare -Diagnosis and care -Quality of life Through this conversation they will also help you understand: -how to create an IAMRARE account (in addition to our study, you may qualify to participate in other studies like this Living Rare Study) -the consent form -how to navigate once signed in -the purpose of a registry and study -types of information that can come from a registry -ways this information can be used to advocate and educate (fb)

Poslední diskuze
Nearby
4.5
Plymouth
About the organization
- 404, G01 -
All are welcome. Click here to sign up for one or more calls in 2025 all times in EST. A link will be emailed to you the day before. Upcoming calls Saturday March 15 1100am Wednesday April 16 700pm Saturday May 24 1100am Wednesday June 11 700pm Saturday July 19 1100am Ask questions and get support during our patientfree monthly calls.
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