SharE-RR Toolkit | Detail


Your country, your requirements

At an operational level, a team of staff will be responsible for the day-to-day running of your registry. Staff should be organized according to key functions, such as database management, data returns, data access, data analysis, reporting, governance, and business.

However, a registry needs overarching leadership, either an appointed individual (working with a steering committee) or an executive committee. This committee should contain experts and stakeholders, as set out in the “Establishing your team” section. This committee will take on responsibility for major financial, administrative, legal/ethical, and scientific decisions, including anticipating and planning for change and ensuring a sustainable source of funding for the registry.

It can also be helpful to have advisory committees focused on specific operational tasks, making recommendations to the registry leadership on matters such as:

In smaller registries, the executive or steering committee may cover one or more of the roles above.

An external advisory group, including registry experts within your country (e.g., running non-renal registries) and internationally (e.g., running other renal registries), can also be very useful for guiding strategy and finding solutions.

A registry governance plan should be developed to describe how your registry will function and the lines of responsibility for tasks such as securing funding, data management, legal and ethical approvals, setting the research agenda, and dissemination of the information arising from the registry. Functions should be kept as streamlined as possible to reduce the administrative burden on the committees, as many committee members will likely be performing these roles voluntarily. There must be a robust and transparent process for identifying and managing actual and perceived financial or intellectual conflicts of interest.

Governance can be thought of as guidance and high-level decision-making. This includes concept, funding, implementation, and distribution of information. Oversight can be thought of as an effort to avoid an error or mistake. A registry needs committees and advisory groups as they provide necessary governance and oversight functions. Who to include in the committees and advisory groups, and which groups will be required mainly depends on the goal of the registry, but must cover the following:

Key principles for successful governance

  • Registry partnership agreements and legal contracts should clearly specify who will have ownership/ access rights to the registry data, and if and how external access to the data will be considered and provided.
  • The expectations of each research partner (e.g., clinicians, government officials, other stakeholders, etc.) should be explicitly delineated, pragmatic, and transparent.
  • All aspects of governance should be codified in a written format that can be reviewed, shared, and refined over time.
  • Transparency regarding any perceived or actual conflicts of interest is important.
  • Mutual respect among all partners is necessary.
  • The value of strong leadership is paramount.
  • Policies and procedures should be developed to support stakeholder engagement and transparency.

Suggested further reading:
Chapter 9 of the AHRQ Guidelines i
Chapter 4.1 of the PARENT guidelines ii