Table 1 Proposed criteria for participation in the assessment and approval of clinical guidelines and protocols for rare conditions/diseases (adapted from recommendation 7.1 in [12])

Panels and groups that formulate and assess ERN guidelines for clinical practice should generally exclude as panel members individuals with conflicts of interest (see Table 2) and should not accept direct funding from medical product companies or company foundations. Such groups should publicly disclose with each guideline their conflict of interest policies and procedures and the sources and amounts of indirect or direct funding received for development of the guideline. In the situation in which avoidance of panel members with conflicts of interest is impossible because of the critical need for their expertise, then groups should:

• Publicly document that they made a good-faith effort to find experts without conflicts of interest by issuing a public call for members and other recruitment measures;

• Appoint a chair without a conflict of interest;

• Limit members with conflicting interests to an agreed part of the panel;

• Exclude individuals with serious conflicts of interest (see Table 2);

• P3ublicly disclose the relevant conflicts of interest of panel members.