Collaborating with patient organisations

The NFU encourages all researchers to collaborate with partners to improve the quality, quantity, and real-world relevance of research data. When possible, involve patients or patient organisations in your research.

Patients and patient organisations can often help:

  • suggest research questions;
  • suggest and recruit study subjects;
  • select relevant outcome measures;
  • help design the informed consent;
  • advise on policies, for instance regarding incidental findings;
  • help to communicate research results back to study subjects.

Frequently Asked Questions

This should start at the design phase and continue throughout your study and after your study's completion.