Published on November 22, 2022 | At the PKD Foundation, we’re constantly evaluating how we can better help patients and families get the PKD care they need. In recent years, more and more data is highlighting inconsistencies in quality of care. It’s time to tackle that head-on. In order to provide the care ADPKD patients deserve, we’re excited to announce the PKD Centers of Excellence (COE) program.

What is the PKD Foundation Centers of Excellence program?

The PKD Foundation Centers of Excellence program will provide a knowledgeable team approach to ADPKD disease care and research in the United States. The PKD Foundation will offer designations to institutions and clinics to serve as a resource for the ADPKD community.

Foremost, the program will help identify clinics where patients can expect to find a care team familiar with managing ADPKD. Providers are categorized as a Center of Excellence or a Partner Clinic based on the level of services they offer. Centers of Excellence provide comprehensive, multidisciplinary clinical services for families affected by ADPKD. Services are coordinated through the center to define an individual’s clinical care needs. Next, plans are made to fulfill those needs, and follow-up is provided to continually optimize clinical management. Patient navigator(s) provide the first point of contact and coordinate your care.

Centers of Excellence provide the broadest range of services and expertise. At minimum, Partner Clinics will include a nephrologist interested in specialized management of ADPKD. We’ll connect Partner Clinics with COE clinicians through mentoring and partnership networks. Importantly, this helps give patients the best care possible if there isn’t a COE nearby.

What can we look forward to with the PKD Foundation Centers of Excellence?

We created the PKD Centers of Excellence program with the belief that the best way to provide ADPKD-centered care is through patient-focused, comprehensive care with the coordination and support of an integrated care team. The program’s mission stands on three pillars. First, understanding PKD through research. Second, ensuring better care for all individuals with ADPKD. And third, educating and empowering the community.

How did we create the PKD Foundation Centers of Excellence?

As we built this program, we considered every party involved in PKD care. Patients, clinicians, and care facilities. When it came to actually building this program, there were several steps.

• Firstly, we interviewed other disease-centered organizations to ask them about best practices and barriers in designing and managing care center programs.
• Secondly, we met with clinicians treating patients with ADPKD around the country to hear about the barriers they face in the clinic.
• Thirdly, we sat down with our most important stakeholders: patients. Through focus groups, we presented them with our idea for the program, asking: Could this be effective in ensuring quality and patient-centric ADPKD care? Are we missing any challenges that you think are important? What does excellent ADPKD care in the clinic look like to you and your families?
• Finally, we brought clinicians back together at our COE Inception Conference in March. This allowed us to finalize various elements of the program. By including these voices in our program design, we hope to create something that will benefit our communities: both patient and clinician! 

How will the COE program benefit the PKD community?

This program will encourage the creation of peer-to-peer networks and participation in patient education and awareness activities.Through the form of grants, the Foundation will also offer financial support to a small number of centers. Additionally, it’ll support an annual conference, bringing together experts in the field to talk about best practices in ADPKD.

As the program grows, we’ll continue working to fill the gaps in our map so that everyone with PKD has close access to the care they need.

Will the Centers of Excellence program support PKD research?

In order to ensure centers provide the best possible care, we’ll need to collect more data on the disease journey. And the ADPKD Registry will be a great partner in that effort. In the future, we plan to ask participants to donate details from their electronic health records. This resource will help us better understand what ADPKD care standards should look like in the United States. Moreover, through our network of clinicians, we’ll make sure discoveries made through research are translated to the clinic as fast as possible. The more physicians know about the disease, the better they can treat it.

There’s a lot to be excited about with this new initiative. Through this program, we’ll strive to spread awareness of ADPKD, increase availability and access to knowledgeable care, and improve understanding through clinical research. By working to create more comprehensive care for patients, we’ll create better patient outcomes.

Find out more about the PKD Foundation Centers of Excellence program, including the locations of our Centers of Excellence and Partner Clinics, here.