Table 3.

Approaches to modify health care systems to allow efficient approaches to rare kidney diseases

Potential Policy Approaches to Address	Action Points
Awareness and prioritization	• Increase awareness of the clinical and economic burden of rare kidney diseases • Generate evidence to guide the development of national CKD plans and guidelines for rare kidney diseases • Introduce targeted measures to increase physicians' awareness of available screening programs • Support the organization of patient registries and initiatives to extend or combine databases • Introduce educational campaigns targeted to the general public • Increase focus on early detection and preventive measures and recommend inclusion of preventive measures in health care action plans
Diagnostic	• Collaborate to advance research on rare kidney disease diagnosis • Expand genetic testing offerings • Implement or expand urine screening programs
Research and development	• Allocate funds for research and development of novel diagnostic tools and treatments for rare kidney diseases • Increase efforts to translate research developments into clinical care • Establish national and international initiatives to generate evidence on rare kidney diseases, if needed based on surrogate end points (e.g., in too small populations for controlled hard end point studies) • Encourage stakeholders to invest in and collaborate on the inclusion of PROMs as a research target
Management	• Develop clinical guidelines specific for the management of rare kidney diseases • Introduce initiatives to homogenize access among countries and social classes to preventive care, hemodialysis, and transplantation • Incentivize medical graduates to specialize in nephrology • Establish multidisciplinary teams to better manage rare kidney disease patients

PROMs, patient-reported outcome measures.