Rare Disease Registries

Rare Disease Registry Checklist

Are you starting to think about a rare disease registry?

Rare Medical Affairs will partner with you and conduct a thorough planning process that will put you on the right track to getting the most out of your registry. We will advocate for you to ensure you get the best outcomes — efficiently and cost-effectively. 

RMA’s expertise includes:

  • Strategic planning to ensure you will achieve your regulatory goals and generate real world data demonstrating the value of your medicine.

  • Protocol development — focusing on your science, data and evidence gaps.

  • Registry governance and sustainability to ensure your patient-centric registry will include input and engagement from all your key stakeholders.

  • Developing quality metrics to ensure your registry is on-track to deliver results.

  • RFI and RFP development and CRO selection and vetting — RMA will be your advocate and partner so you select the best service providers that will meet your needs.

Are you in a rare disease registry rescue situation?

Are you’re concerned about the success of your registry endeavor? RMA can help. Contact us to talk about your specific situation.

Let’s talk about your rare disease registry plans and how RMA can work with your team to optimize and get the most out of your registry.