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PSN PKDR Project: Pioneering PKD research in Asia

PSN PKDR Project: Pioneering PKD research in Asia

The PSN Polycystic Kidney Disease Registry (PKDR) Project was conceptualized in 2012 with the vision of establishing a modern database for our PKD patients. It was formally launched in 2013, in the presence of Dr. Lisa Guay-Woodford, the leading authority in PKD research today. Since then, the PKD Task Force has been busy with making the database forms, orienting the fellows on the database structure, and collecting initial data.

Polycystic kidney disease is one of the most common inherited renal disorders. The disease is often clinically silent, the natural course being progressive involvement of both kidneys. It accounts for 5-8% of ESRD, and unfortunately, there is very limited data as to disease progression, outcomes, and characteristics. Currently, there are only 3 existing PKD registries in the world, all being in the Western hemisphere. By establishing the PKDR, we are putting our country as the forerunner in PKD research in Asia.

Why is PKD research important?

A registry not only helps characterize those affected by disease, but also identifies those at risk for having the disease. This enables a better assessment of the impact of the disease on the community. The data gathered in a registry provides for numerous research opportunities. Better epidemiological data and patient care improvement are only some of the benefits of having a disease database. More important, a registry will facilitate meaningful interactions between patients, physicians, and the stakeholders, paving the way for better health policies.

How the PKDR can help patients.

Patients will benefit most from the establishment of a registry. The data gathered will provide significant information that will enable patients with PKD to lead better, longer lives. It is also the first step in finding relevant treatments, even possibly a cure. When patients can be identified through the database, it is then easier to form support groups that can provide clinical and psychosocial assistance. Through these collaborations, policy changes may be pushed that may help protect patients and persons at risk from insurance and employment discrimination.

Will the PKDR benefit physicians?

Of course, a registry also benefits the physicians caring for these patients. It leads to a better understanding of the disease, increases awareness of the disease among the general public, and gives physicians and scientists abundant material for research.

How will other stakeholders benefit?

For the policymaking bodies in our community like Philhealth, a registry makes available vital data that will enable the creation of policies on health benefits, health insurance, and employment. It also provides a venue for addressing patients’ needs through advocacies.

What’s in it for me?

Well, a registry benefits you! Whether you are a part of the clinical team, or a patient, or a policymaker, a registry will help because of the meaningful data it provides.

2016 marks an important year for the PKDR because it will be formally opened to all PSN members. We are excited for your upcoming enthusiastic participation in this endeavor. The success of this project will surely pave the way for more studies in the future.

Head to the Galleries>Download Galleries link above and download the Purple forms.