Data Strategy for Research Development – What Do Advocates Need to Know

June 24, 2021

*Recommended for Patients/Advocates


The Role of Patient Data from Basic Research to Approval and Access

  • Understanding the role of patient data from preclinical to approval to reimbursements – the importance of planning ahead
  • Differentiating study/non study data Evolutions in Natural History Studies and Registries
  • Building a registry or natural history study with intent
  • Ensuring that data is clearly defined with a goal in mind to make sure it is measurable, actionable and of value to patients and researchers

Measurement Tools: Making them Work in Rare

  • Addressing challenges in measuring patient data in rare disease research and limitations of current tools for patient-reported outcomes
  • Opportunities to build better measurement tools to help researchers and patients


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