The End-Stage Kidney Disease Prevention and Innovation Act establishes a framework for addressing rare kidney diseases through the creation of Centers on Rare Kidney Disease Research within the New Jersey Department of Health. The act appropriates $10 million to support these centers, which will conduct research on various aspects of rare kidney diseases, including their causes, symptoms, and treatment options. The Commissioner of Health is authorized to enter into cooperative agreements and provide grants to public and private nonprofit entities to facilitate the planning and operation of these centers. Additionally, the act mandates the establishment of an advisory board comprising nephrologists, patient advocates, and public health experts to guide the centers' activities.
Furthermore, the Department of Health is tasked with conducting a comprehensive study on testing, preventative care, and treatment related to rare kidney diseases. This study will evaluate the effectiveness of routine urinalysis, kidney biopsy reliability, and the use of genetic testing, while also examining the social and behavioral factors contributing to these diseases. The findings from this study will be compiled into a report to be submitted to the Governor and the Legislature within 12 months after the act's expiration, which is set for five years after its enactment.