National Registry of Rare Kidney Diseases

Launched by UK KIDNEY ASSOCIATION · Sep 26, 2023

Keywords

ClinConnect Summary

The National Registry of Rare Kidney Diseases is a research project aimed at gathering information from patients who have specific rare kidney diseases. By collecting this data, the researchers hope to create helpful guidelines for diagnosing and treating these conditions, check how well current treatments are working, and support the development of new therapies. If you or a loved one has one of these rare kidney diseases, you may be invited to participate in clinical trials and other studies, which could provide valuable information about your health and treatment options.

This study is open to both children and adults with rare kidney diseases, and the specific eligibility requirements can vary depending on the condition. Participants can expect to share their experiences and health information, which will be used to improve care for others in the future. Additionally, through a partnership with Patients Know Best, patients have the opportunity to report their own quality of life and health outcomes, making it easier for everyone to understand the impact of these diseases. If you think you might qualify, more details can be found at the provided link.

Gender

ALL

Eligibility criteria

• • Kidney Rare Disease
• • Paeds and adults
• • Eligibility differs for each rare disease group
• • See: https://ukkidney.org/rare-renal/recruitment