Breaking Down Silos to Accelerate Research for Rare Kidney Disease
London, Canada; Scottsdale, United States (September 7, 2021)—Alport Syndrome Foundation and Pulse Infoframe are pleased to announce that the advocacy group for Alport syndrome, a rare kidney disease, will be joining the National Kidney Foundation (NKF) Patient Network. Powered by Pulse Infoframe’s healthie™ platform, the NKF Patient Network fosters data collaboration among patient advocacy groups with kidney disease. This in turn helps researchers and drug developers advance research by collecting real-world evidence across multiple kidney diseases.
Pulse Infoframe is committed to rare kidney conditions, and it is only through global collaboration that the challenges communities like the Alport Syndrome Foundation face can be solved. Low case numbers, a problem for the rare disease community, makes research challenging.
“Developed as part of the larger NKF Patient Network umbrella registry, the NKF Patient Network – Alport Syndrome provides a valuable opportunity to capture critical data about aspects of our genetic kidney disease that are specific to Alport syndrome, currently understudied, and have been documented by the patient community as important in their experience living with this rare disease,” says Lisa Bonebrake, Executive Director of Alport Syndrome Foundation. “Partnering with Pulse Infoframe and the National Kidney Foundation, with their clinical, scientific and technological expertise, is a great fit for this patient registry. Moreover, it allows Alport syndrome to be studied alongside many other kidney diseases and hopefully will be a catalyst for much needed research and pharmaceutical interest.”
The current goal of all treatments for Alport syndrome is to slow the rare disease’s progression to prevent a kidney transplant for as long as possible. This can include prescriptions for medications that lower blood pressure and decrease the spill of protein into the urine to slow kidney scarring. A patient registry can systematically track a patient’s journey, providing valuable data to help pharmaceutical companies study the effects of drugs in different stages in that journey.
“We designed healthie™ with data protection and scientific collaboration in mind,” says Pulse Infoframe founder and CEO Dr. Femida Gwadry-Sridhar. “Having Alport Syndrome Foundation join our platform is an example of exactly that: participants can decide how much of their data they want to share, and a governance structure provides opportunities for researchers from anywhere in the world who are interested in kidney disease to have access to a broad range of data that are structured for ease of analysis.”
The healthie™ platform aids kidney disease research through a centralized approach that supports natural history collection and a patient registry spanning across kidney diseases. Researchers can therefore study either the broader conditions or focus on specific diseases, such as Alport syndrome.
“When we conceptualized the NKF Patient Network,” says Kerry Willis, PhD, Chief Scientific Officer, NKF, “we always envisioned other rare kidney disease partners collaborating with the NKF and Pulse Infoframe to further extend the scope and reach of the registry. We’re so pleased that Alport Syndrome Foundation has joined forces with our two organizations on this expansion. With the new NKF Patient Network – Alport syndrome we’ll be able to provide valuable information to researchers and in turn valuable assistance to clinical trials and hopefully treatments for people suffering from this rare form of kidney disease.”
The collective value to all stakeholders is an opportunity to collaborate within the same environment and to leverage high-quality data to support drug development activities at biotech and pharma companies. For more information, please visit the following websites: www.alportsyndrome.org, NKFPatientNetwork.org, and www.pulseinfoframe.com.
About Alport Syndrome Foundation
Alport Syndrome Foundation is the leading patient-led, independent, non-profit organization in the United States educating and giving a voice to the Alport syndrome community. Its mission is to improve the lives of those affected by Alport syndrome through education, empowerment, advocacy and research. Its vision is to conquer Alport syndrome. Alport Syndrome Foundation directs the majority of its resources to research and research-related activities. It also raises awareness and provides educational resources for patients, medical professionals and researchers through its website, regular email communication with patients, social media presence, and participation at medical and rare disease conferences.
About the National Kidney Foundation
The National Kidney Foundation (NKF) is the largest, most comprehensive, and longstanding patient-centric organization dedicated to the awareness, prevention, and treatment of kidney disease in the U.S. For more information about NKF, visit www.kidney.org.
About Pulse Infoframe
Pulse Infoframe is a real-world evidence generation, health informatics and insights company that provides a technology and services platform designed to extract, curate, analyze and disseminate evidence-based conclusions that improve the quality of people’s lives. Pulse Infoframe provides a full solution for registries, natural history studies and a range of other observational and regulatory grade studies. With provider relationships for patient access, Pulse Infoframe ensures that insights, evidence and publication results are disseminated across the ecosystem, including advocacy organizations, key opinion leaders, researchers and sponsors. Learn more at www.pulseinfoframe.com.
