Join us in making more meaningful discoveries in 2023!

The PRIDE Study refines demographic survey questions
In December, many of our participants received an invitation to respond to a survey titled Refining Demographics Questions. This survey was sent out in partnership with researchers from Stanford University as part of The PRIDE Study (lead by Juno Obedin-Maliver, MD, MPH, MAS, Mitchell R. Lunn, MD, MAS, and Annesa Flentje, PhD).

The goal of this survey is to make better demographic survey questions. As part of this study, researchers tested various forms of questions. Participants were randomized into 10 different groups that contained different forms of questions asking about sexual orientation, gender identity, sex assigned at birth, intersex questions, and whether someone is part of the LGBTQ+ community, since the ways these questions are asked can influence how people answer the questions. The different groups contained surveys that were more limited with fewer answer choices or had more expanded answer choices and formatting.  

Read more about The PRIDE Study and this survey here.

Washington Post
UCSF heart expert says Damar Hamlin may have suffered heart arrhythmia
The Washington Post interviewed Dr. Gregory Marcus, a professor of medicine in the Division of Cardiology at the University of California, San Francisco and Principal Investigator in the Health eHeart study, to share his expert opinion on what might have happened to Damar Hamlin during the game on January 2nd.
Read the article
Episode 3 of the COVID-19 Citizen Science Podcast

Tune in to podcast #3, where our UCSF intern, Serena, and our Program Director, Madelaine, will answer some of your frequently asked questions about the study. Please note that we are unable to answer individual questions about health, but we will do our best to answer general questions about the study.  

What is an Institutional Review Board (IRB)? 
At some point the “IRB” is mentioned during this podcast. So what is an IRB? Institutional Review Boards (IRBs) are responsible for protecting people participating in studies by reviewing how studies are planned and executed to help ensure that participants are not exposed to unreasonable risk. Research involving people must be approved by an IRB before they start. Click here to learn more about UCSF’s IRB. 

Listen to the podcast
Have questions about the study? Send them our way, so we can answer them in our upcoming podcasts: Click here. We want to hear from you!
New Year, new Health eHeart
In the new year, we will be launching the next version of the Health eHeart study. We’ve streamlined the surveys and updated the look and feel, so making an impact will be even easier. You will be able to participate on the Eureka mobile app in addition to the web! If you are a long time participant who hasn’t received any surveys for awhile, look out for new surveys and opportunities to participate this year. If you’re new to the study, welcome!
The Health eHeart study is the flagship study of heart disease that started the Eureka project. The study has grown to 200,000 participants! You can participate even if you don't have heart disease.
Congenital Heart Initiative celebrates global reach in first two years
The first patient-powered registry for adults living with congenital heart disease (CHD)—the Congenital Heart Initiative (CHI)—celebrates a major milestone this month. Since it launched two years ago in December 2020, the registry has enrolled more than 3,300 adults with CHD from all 50 states and 28 countries.

The CHI study, developed jointly by patients and providers, has been designed to capture longitudinal data about life with congenital heart disease directly from the people who experience it, with the goal of increasing knowledge about CHD and improving patient care. 

CHD patients participate in the registry entirely online through web-based electronic surveys on the Eureka platform every 4 months. Participants also receive regular newsletters that highlight findings and provide access to patient-specific resources, including content from the Adult Congenital Heart Association (ACHA), a key partner. The partnership with ACHA has also given registry participants the opportunity to interact with other people living with CHD—a key request identified as important based on input from people who have already registered. 

A sub-study of the CHI, the Congenital Heart Initiative: Redefining Outcomes and Navigation to Adult-Centered Care (CHI-RON) study was launched in May 2022. This unique study is designed to better understand how gaps in care impact the ACHD patient experience and fill in CHD knowledge gaps. So far more than 1,700 patients have been recruited from 12 sites, and through its partnership with PCORnet®, the National Patient-Centered Clinical Research Network, the CHI-RON study explores three distinct types of data at once: patient-reported outcomes, health insurance claims, and electronic health records (EHR). The effort is led by Children’s National and Louisiana Public Health Institute.

In addition to the innovative CHI-RON study currently underway, the Congenital Heart Initiative will be kicking off studies on pregnancy, metal health, and long-term health outcomes in the ACHD population within the next year. 
Copyright © 2023 UCSF Eureka Platform, All rights reserved.

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.

Email Marketing Powered by Mailchimp