Data DIY

Your Involvement in Driving Understanding, Discovery, and Treatments for Rare Disease

Thanks to the generous support from the Chan Zuckerberg Initiative, this capacity-building series is comprised of four core, progressive training modules on data and data strategy:

         1. The Why’s and How’s of Data Collection
         2. Data Trusts and Governance
         3. Developing Collaborative Research Networks
         4. Becoming a Data-Centric Community

We are living in the most hopeful, rapidly evolving time in medical history. Patients, caregivers and partners, clinicians and researchers are collaborating to accelerate results in large part because of the incredible wealth of and access to health data that’s allowing them to do more, faster. The challenge for patient advocates and organization leaders now is to be as technically savvy about data as the rest of these passionate stakeholders. Knowledge is power, and we want you to be empowered data owners and stewards. 

Part 1: The Why’s and How’s of Data Collection

Part 1 of Global Genes’ Data DIY program helps organizations understand the why’s, what’s and how’s of data collection for advocacy leaders looking to accelerate research for their communities. Build a common understanding of key terms in research, data governance and the business models of different types of research platforms, expanding your knowledge of your rights as data owners and obligations as data stewards.

Part 2: Data Trusts, Governance and Collection Platforms

Part 2 of Global Genes’ Data DIY program builds a common understanding of the rights we have as data owners and our responsibilities as data stewards. Led by experts in data collection collaboration agreements, learn how to develop a governance plan for your program that includes key elements such as, defining objectives, identifying stakeholders, building a team and providing informed consent. 

Part 3: Developing Collaborative Research Networks

Part 3 of Global Genes’ Data DIY program focuses on generating interest among clinicians and researchers, growing and managing your scientific network, and exerting control over the destiny of your community’s research. Hear Dr. David Fajgenbaum, founder of Castleman’s Disease Collaborative Network (CDCN), outline his eight-step approach to advancing patient-centric research. You’ll also learn from a panel of researchers, clinicians and advocates on how to attract interest and communicate around outcomes.

Part 4: Becoming a Data-Centric Community

Part 4 of Global Genes’ Data DIY program emphasizes specific strategies that will make your data more appealing to investors and useful for continued research and development. Expand your data knowledge by learning from experts at Amazon Web Services, who can demonstrate how achieving better clinical care, an earlier diagnosis, and a larger network of investors can be achieved through the power of data management.