KIDNEY DISEASE REGISTRY
Strengthening Kidney Disease Research and Care Through GlomCon’s Global Kidney Disease Registry
By Rica Pitogo
Senior Program Manager for Clinical Research
GlomCon Foundation
Kidney disease is a growing global health concern, especially in underdeveloped countries where healthcare facilities are limited. Extensive and coordinated data collection across many sites and regions is necessary to better understand risk factors and disease trajectory, particularly for the rarer types of kidney diseases. Unfortunately, nephrology lags behind other specialties, such as oncology, in large national and international data registries. In this GlomCon Pubs post, I would like to review GlomCon’s Kidney Disease Registry and how its innovative and unique design can lower barriers to participation and facilitate global collaboration. This Kidney Disease Registry is an open-source, decentralized system and stands out through decentralization and adaptability, setting it apart from conventional registries.
Background: A disease registry is a system that records, stores, and analyses data on patients suffering from a particular ailment, such as chronic kidney disease (CKD). These registries are instrumental in determining the prevalence of diseases, keeping track of patient outcomes, and influencing healthcare policies. There are several national or local rare kidney disease registries. Like nearly all disease registries, the data collection, storage, and oversight are centralized and managed mostly by an academic institution or sometimes by a national health or research authority (such as the NIH). However, these systems tend to be too rigid within diverse healthcare settings, and broad participation is often not embraced due to loss of data ownership and regulatory barriers.
GlomCon’s Kidney Disease Registry (KDR): GlomCon’s KDR is a new open-source, decentralized platform that accommodates greater adaptability through local control while enforcing better data security and privacy through record deidentification. This approach is particularly attractive to smaller academic institutions and private practices, as these now can develop their own data registry that is compliant with patient privacy and research regulations (e.g., HIPAA, FDA 21 CFR, European GDPR, and ICH Guideline for Good Clinical Practice, among others) without needing to subscribe to systems that are hard to implement and costly to maintain, and without losing ownership of their data.
Figure 1. GlomCon Kidney Disease Registry platform structure
Further, the GlomCon Foundation intends to make the KDR available to low-income countries at low to almost no cost. Underdeveloped countries face significant challenges in managing kidney disease, including limited healthcare infrastructure, insufficient funding, and a lack of trained professionals. GlomCon’s KDR addresses these concerns by empowering local healthcare providers with its flexible, scalable platform. This platform allows them to collect necessary patient details via deidentification while maintaining privacy.
The KDR’s deidentification process removes any personally identifiable information, including dates, from patient data before sharing it, thereby ensuring strict patient privacy when using such information for research purposes and collaborative studies.
Most importantly, GlomCon’s KDR is not just a data collection system but a platform fostering research collaboration. This means individual sites can easily join multi-site studies as they become part of a broader research effort across several regions or nations. It also allows the local registries that use this platform to be tailored by the respective sites depending on their research questions or operation and quality needs; these can include monitoring outcomes for treatment, recording cases of kidney diseases, or contributing to worldwide studies. GlomCon’s KDR is not just a tool; it’s a global initiative that unites healthcare providers and researchers to reach a common goal, making you part of a larger, impactful movement.
GlomCon’s KDR provides a much-needed foundation for conducting high-quality research in various settings. It supports different research initiatives, such as clinical trials, by facilitating international collaboration and data sharing while guaranteeing strong privacy protection. This secure and ethical method of collecting, analyzing, and sharing data empowers local healthcare providers and researchers to help build research capacity and drive innovation in patient care and treatments.
Although GlomCon’s KDR holds great potential, major considerations need to be considered. Ethical considerations concerning data collection and use, such as patient confidentiality and informed consent, are paramount. The deidentification capability of GlomCon’s KDR is an essential attribute for these ethical concerns that should ensure proper utilization and secure handling of patients’ information — prioritizing the protection of a patient’s medical records. Besides being built with established security features to safeguard delicate information, local sites must also have measures to protect data. Infrastructure investments must be made to keep kidney disease registries sustainable and scalable over time; staff training and support are also necessary. These may prove particularly difficult in low-resource settings where funding is limited and expertise needs to be improved. Therefore, we will adopt a stepwise approach and onboard sites and investigators based on their credentials and capability to provide local infrastructure, standards, and expertise.
In conclusion: In regions with a shortage of resources and the burden of disease can be overwhelming, kidney disease registries are important for progress in healthcare and research. I am particularly excited that GlomCon’s KDR represents a significant shift from traditional kidney disease registries through its open-source, decentralized platform that empowers local healthcare. GlomCon’s KDR will enable more inclusive and comprehensive approaches toward kidney disease research and care by making it easy for sites to join multi-site studies and encouraging international collaboration. If we want to improve global kidney health while reducing inequities in care provision, we must invest in registry systems like that provided by GlomCon’s KDR. This investment is vital for the outcomes of all patients across borders and will ensure their wide adoption, making them valuable worldwide.
For more information on participating and utilizing our platform, visit https://www.glomcon.org/for-mds/kidney-disease-registry.