Watch NKI and special guest speaker Dr. Jonathan Hogan from The University of Pennsylvania, as we demystify Nephrotic Syndrome research! Research is important to all members of the NS community- so why not learn about it!
We talk about how research works, what is happening in the NS research world, and what patients and their families can do to help. Come with your research questions, and prepare to have them answered!
Are you buried in paper from all your doctor visits? Ditch the binder- there’s an app for that! As part of the NephCure Kidney Network Patient Registry (www.nephcurekidneynetwork.org) we are developing a mobile app that makes keeping track of your paper medical records a thing of the past! My Kidney Buddy conveniently tracks crucial information such as new symptoms, current medications, and lab values and allows you to easily access them on your smartphone.
Additional features include a graphing function so you can better track changes in your lab values over time. The My Kidney Buddy diary feature also allows you to track changes in your diet or if new symptoms occur.
Coordinating your care can be complicated and it is important that you and your physician have all your important medical information available. By using My Kidney Buddy, you can be sure that your important health information is recorded and can be easily relayed to your physician… all without the hassle of carrying a heavy binder!
We are looking for ‘beta testers’ to try this application and give us feedback on your experience prior to its release to the general public- and we need your help! Help us help you by testing My Kidney Buddy today!
Email Chelsey Fix at cfix@nephcure.org for more information.
We are pleased to provide you with a copy of the first Annual Data Report of the NephCure Kidney Network Patient Registry. The 2015 Annual Data Report summarizes the data provided by 350+ Registry participants collected from March 2014 to March 2015.
Please contact registry@nephcure.org with any questions.
The most unique aspect of the NephCureKidney Network Patient Registry is that it is governed by a group of patients, patient parents, patient advocates, clinicians, researchers and representatives from industry who work together to ensure that the needs of the NS patient community and the NS research community are met.
Each month this group of 18 individuals meets via conference call to discuss topics focusing on recruitment and retention, patient engagement, data collection, and medical profession engagement. Because each group of stakeholders can voice their perspectives on the call, it is ensured that the NKN registry will remain both patient centered and a valuable tool for the research community.
Want to be involved?
If you are interested, email Joanna Dauber at jdauber@nephcure.orgor call 610-540-0186 x 36.
Applications will be accepted until April 27th, 2015.
What a Year We Had in 2014!
Thank you to all those who collaborate with NephCure Kidney International (NKI) to advance its mission to support research leading to better treatments and cures for those suffering with FSGS and other Nephrotic Syndrome diseases. 2014 saw several major successes in the research world that move us closer to achieving our goals.
Below is a summary of NKI’s 2014 research-related accomplishments.
NEPHCURE KIDNEY NETWORK PATIENT REGISTRY
Hundreds of people with primary FSGS and related glomerular diseases enrolled in the newly launched NephCure Kidney Network Patient Registry. These patients and care givers of patients are at the forefront of a movement called “patient powered research”. By sharing and comparing data contributed by patients about their health and quality of life, we can accelerate the development of new treatments, including new drugs. It is important for people with a rare disease to STAND UP & BE COUNTED to ensure research focuses on the issues of greatest importance to patients and their families. To learn more or enroll, click HERE.
RESEARCH GRANTS
In 2014, the NKI grant program committed over $2.6 MM in support for scientific investigations that advance knowledge about the cause of NS disease, evaluate possible drug targets and help physician/scientists track the natural history of these rare diseases. Click HERE for more information about grants awarded to investigators at Washington University Medical Center, Boston Children’s Hospital and Rush University. For more information about the research consortia we support, click HERE for the Nephrotic Syndrome Study Network and HERE to learn more about CureGN.
CLINICAL TRIALS
Patient participation in clinical research is essential to advance new treatments. In 2014, NKI launched several new programs to educate patients and increase awareness of opportunities to participate in research.
CATALYZE, COLLABORATE AND CONVENE
NKI is dedicated to being a catalyst along the research continuum: from support for basic science research to working with the biopharmaceutical industry and the FDA to understand how we might increase the numbers of new drugs moving into the drug approval pipeline and, finally, how to rapidly integrate new treatments into health care practice.
2014 was a busy year as we joined forces with our partners in healthcare and research to promote better treatments and faster cures.
The advocacy work of NKI volunteers, staff and our professional partners in Washington, D.C. was instrumental in significant NEW FUNDING for FSGS and NS research in 2014.
The National Center for Advancing Translational Sciences (NCATS) at the National Institute of Health (NIH) awarded $10 MM in new funding to continue the Nephrotic Syndrome Study Network (NEPTUNE), a consortium of research centers in the US and Canada collecting and analyzing data about patients newly diagnosed with primary NS diseases. NKI was a principal funder of the first phase of this study and continues to support and participate in its expansion.NKI is a leader in assembling, facilitating and promoting professional meetings that bring together partners from industry and the academic world along with patients and their advocates to promote NS health research. In 2014, NKI:
researchers from a variety of scientific disciplines and from around the world to promote interactions and new collaborations and to investigate emerging directions in podocyte and glomerular biology research.
President Barack Obama announced recently the Precision Medicine Initiative to be included in the 2016 federal budget. This is a bold new enterprise to revolutionize medicine and generate the scientific evidence needed to move more personalize medicine into every day clinical practice. Precision Medicine can be defined as getting the right treatment, at the right time – every time – to the right patient. It is about tailoring treatments “for a person” based on how they experience a medical condition rather than focusing on treating “the disease.” The President’s budget includes support for the FDA to develop new approaches for evaluating next generation genetic screening and the NIH to create research that embraces volunteer participation.
There is significant emphasis in this Initiative on engaging people experiencing a health problem in the development of targeted treatments for their condition. Patients should be active partners in the search for new and better therapies and not merely passive recipients of investigational treatments. Dr. Francis Collins, Director of the National Institutes of Health, in a small luncheon following President Obama speech, spoke with great enthusiasm of the need to gain better insights into the biology of all diseases to make a difference for the millions of Americans who suffer from them. He was clear that this initiative must be led by us, the people. He stated, “The word ‘patients’ is not the right one. This is about participants and really about partners.”
Dr. Kathy Hudson, Deputy Director for Science, Outreach and Policy at NIH commented, “The Initiative will set the foundation for new ways of engaging research participants, sharing health data and information, and employing technology advances to mine the information for comprehensive results.”
NephCure Kidney International is very excited to already be a part of this movement as the NephCure Kidney Network (Patient Registry) is the ONLY kidney disease Patient Powered Research Network in another key government initiative — the Patient-Centered Outcomes Research Network (PCORnet). The NephCure Kidney Network is poised to be at the forefront of integrating new opportunities from the President’s Initiative with new technology and “big data” solutions that will propel new therapies for our patient community.
STAND UP & BE COUNTED. Visit https://www.nephcurekidneynetwork.org/ to learn more about participating in the NephCure Kidney Network (Patient Registry) so your voice can be heard and to share your experience to accelerate new therapies and, one day, a cure for FSGS and Nephrotic Syndrome.
Contact research@nephcure.org to connect with a member of NephCure’s research team.
We are pleased to share that Kathleen Broderick and Randall Snyder were recommended and have accepted their nominations as Steering Committee Co-Chairs for the NephCure Kidney Network (NKN). Kathleen was considered a strong candidate due to her dual experience as a patient caregiver as well as a patient advocacy representative. Similarly, Randy’s dual perspective as a patient caregiver and clinical provider give him unique insight relevant to the NKN.
Kathleen is a member of the NephCure Board of Directors and Research Committee and an editor at DeGruyter Publishing, a Science, Technology, and Medicine (STM) publisher of professional books and scholarly journals in Boston, Massachusetts. Additionally, Kathleen cares for her 16-year-old son, who was diagnosed with Nephrotic Syndrome at 20 months.
Randy is an interventional radiologist with his master’s in molecular biology living in Medford, New Jersey, who cares for his son who was diagnosed with focal segmental glomerulosclerosis.
Kathleen and Randy will be facilitating Steering Committee calls and communication moving forward. Please join us in welcoming Kathleen and Randy as the inaugural NKN Steering Committee Co-Chairs!
NephCure went to Las Vegas last week for the National Kidney Foundation’s Spring Clinical Meetings, where 3,000 nephrologists, nurses, dietitians, and social workers, among others, gathered to learn about the newest developments related to all aspects of nephrology practice.
We met with some area Nephrologists and patients and shared information around the NephCure Kidney Network Patient Registry (NKN). NephCure Scientific Advisory Board members Dr. Debbie Gipson, Dr. Daniel Cattran, and Dr. Gerald Appel were in attendance and led workshops on updates in Nephrotic Syndrome for 2014.
NephCure was also one of several authors of “Understanding Decision Making in Nephrotic Syndrome (NS) from the Perspective of Patients, Parents and Providers” which was presented at the Poster Session throughout the conference.
We also saw a lot of promotion for the Luis Collazo fight, which took place May 3rd at the MGM Garden Arena. Collazo was wearing NephCure in support of his friend Allie Genatt.
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