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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.
education & researchHydroxyurea Use and Outcomes of Pregnancy in Sickle Cell DiseaseBackground: Hydroxyurea reduces pain cr...
videos & visualsHow This Disease Changes the Shape of Your Cells – Amber M. Yateshttps://www.youtube.com/watch?v=hRnrIpUM...
news & eventsATS Releases Guidelines for Home Oxygen Therapy in Children With Sickle Cell DiseaseThe American Thoracic Society (ATS) rele...
people & placesJawan Ayer-Cole, MDDr. Jawan C. Ayer-Cole is a Hematology /...
people & placesAshley Singleton, MPHAshley Singleton is a Program and Resear...
Community CenterCalifornia Sickle Cell ResourcesThe Comprehensive Sickle Cell Center at ...
education & researchUse of Marijuana in Patients with Sickle Cell Disease Increased the Frequency of Hospitalization for Acute Painful V...Introduction: Recently, there has been g...
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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.