Establishing your team
Involve all the right people early on
Once you have established that it is appropriate and feasible to develop a registry in your region, the next step is to identify all the people and organizations you will need to involve in order to make your registry a success. At this planning stage, you may want to form an advisory committee, bringing together a combination of experts and stakeholders.
A wide range of knowledge, expertise, and skills are needed to plan and implement a registry.
Build a registry team
While a large registry may need to employ all the members of this team, a small registry may use consultants to access this expertise.
These are individuals and organizations who will have an interest in your registry, from how it processes personal data to how it interprets results. They should be involved early on in defining the purpose and scope of your registry. Aligning your registry’s purpose with your stakeholders’ priorities could mean it has more support to get established, but take care not to extend the purpose or the dataset too much and reduce feasibility.
Stakeholders to consider include:
- People with kidney disease and their care givers
- Senior leaders from national or regional nephrology and transplant societies, including (in some regions) chairs of leading nephrology departments
- Policymakers from the Ministry of Health, regulators, and supporters
- Industry partners, including dialysis providers
This advisory committee should meet regularly, guiding the work of a smaller number of individuals who turn their recommendations into the essential building blocks of the registry.
Suggested further reading:
Chapter 2.5 of the AHRQ Guidelines i
Chapter 6.1.6 of the PARENT guidelines ii