Review & Evolve Your Registry

Overview

Review whether you’ve met your goals, make adjustments based on that assessment, determine whether you’re ready to move into the next phase of your registry and to begin to plan for the move. This iterative evaluation of your progress will help you to improve the effectiveness and relevance of your registry and provide another opportunity to engage with your stakeholders.

Resources

Revisit Registry Goals

Section VI: Evaluating Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition Agency for Healthcare Research Quality (AHRQ) (link)

Plan for Next Steps

RaDaR Tool: Registry Evaluation Checklist RaDaR

Rare Toolkit: Finding Your Fundraising Strategy Global Genes (link)

We Can't Do It Alone: Structure and Governance for Research Collaborations Global Genes (link)

Rare University: Understanding Drug Development Global Genes (link)

Track 3: Show Your Data - What Do You Need To Have Before Approaching Industry Global Genes (link)

Track 2: Funding Sources You May Not Have Heard of - Funding and Collaboration Opportunities with Diverse Federal and State Agencies Global Genes (link)

Rare Webinar: Building the Bridge between Foundations and Industry Global Genes (link)