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Trusted Resources: News & Events
Latest announcements and gatherings
Data DIY – Data Trusts and Governance
Part 2 of Global Genes’ new Data DIY series will build our common understanding of the rights we have as data owners and our responsibilities as data stewards. Led by experts in data collection collaboration agreements, you’ll learn how to develop a governance plan for your program that includes key elements, such as:
• Defining program objectives
• Identifying stakeholders
• Building your team
• Protecting participants’ privacy
• Providing for informed consent
• Determining how data is accessed
• Ensuring sustainability over time
Wednesday Evening Welcome Reception: Join fellow guests for a casual meet and greet. The evening welcome reception will be July 17th from 5:00 pm to 7:00 pm EST.
The workshop will be held on Thursday, July 18th, followed by office hours on Friday, July 19th, where attendees will be able to schedule one-on-one time with the experts.
July 17-19, 2019
Washington Marriott Georgetown
1221 22nd Street Northwest
Washington, DC, United States
This event has ended. Download Presentation Slides.
news & eventsCOVID-19 Outcomes Among Individuals With Sickle Cell Disease by IASCNAPA – WebinarLearning Objectives: • Understand how...
news & eventsSurprise of a lifetime: Devin McCourty gives away two Super Bowl LIII ticketsBrunel Etienne says one his childhood dr...
news & eventsHemoglobinopathy Counselor Training Course – VIRTUALUPDATE! 2020 Hemoglobinopathy Counselor ...
education & researchPatient Reported Outcomes and Adherence to Hydroxyurea in Adolescents and Young Adults With Sickle Cell Disease: A F...Background: SCD-related complications r...
education & researchShared Decision Making for Hydroxyurea Treatment Initiation in Children With Sickle Cell AnemiaClinical trials have demonstrated hydrox...
people & placesAugusta University Sickle Cell CenterLocated in Augusta, Georgia, Augusta Uni...
Community CenterAdulting is especially difficult for youth with special health care needsThere are approximately 4.3 million adol...
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.