Table 4.

Most important elements to be considered for policy action as defined by the expert panel participating in this project, with the corresponding barriers and involved stakeholders

Policy Action	Barriers (Lack of Solutions)	Involved Stakeholders
Recommend early diagnosis in national plans	Structured action plans, willingness to implement early screening, inefficient screening and interpretation of results	Governments, regulators, medical professionals
Increase physicians' awareness of urine screening programs and their implementation	Education, organization	Medical associations, medical professionals
Develop and expand existing clinical guidelines specific to rare kidney diseases	Evidence, training in evidence-based medicine and guideline development, funding	Medical associations, guidance bodies
Introduce policies to promote clinically relevant genetic testing	Funding; appropriate analytic technology, technical training in genetic analysis, trained personnel, targeted requests by clinicians	Governments, funders, research institutes, researchers, medical professionals
Allocate more research and development funds to rare kidney diseases	Funding, regulation	Governments, funders
Provide early optimal access to innovative treatments	Funding, evidence base, education of medical professionals, affordable price setting	Governments, pharmaceutical industry
Generate evidence to expand the understanding of rare kidney diseases	Funding, organization, privacy regulations	Pharmaceutical industry, medical professionals, research institutions, governments, funders
Set up specific rare kidney disease registries	Funding, infrastructure for big data analysis, privacy regulations, transparency in data communication and sharing	International, national, and regional medical associations; pharmaceutical industry

This ranking was the final result of the 2-day European Kidney Health Alliance Roundtable on the topic. The first ranking round was spread over five topics: (1) lack of awareness; (2) the diagnostic challenge; (3) the research and development challenges; (4) the health care system challenges; and (5) management challenges. The top scores for each topic were then submitted to a final vote with the intention to define which topics were considered most important for the panel.

The order from top to bottom indicates the order of importance according to the panel of experts, but this order may be adapted to the local needs of countries or regions. The ranking should also be considered as specific for this panel in the situation of this specific meeting. A different panel of experts might have come to different conclusions.