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NPF Announces an Exciting New Venture

The National Pancreas Foundation to Develop the First National Patient Registry

The registry will bring together data from patients and cutting-edge researchers, all working to improve care and develop new and better therapies for individuals suffering from pancreatic disease.

BETHESDA, MD – July 10, 2014 – The National Pancreas Foundation (NPF), a nonprofit organization that provides hope for those suffering from pancreatitis and pancreatic cancer, announced that it will build the first ever national patient registry devoted to all pancreatic diseases, including pancreatic cancer and pancreatitis.

“We are very excited to announce the National Pancreas Foundation’s move forward with the only national patient registry for patients suffering from pancreatic cancer, pancreatitis, and other pancreatic diseases,” said Joseph Titlebaum, Esq., Chair of the National Pancreas Foundation. “Developing the registry will enable greater collaboration amongst researchers and our foundation, increase the quality of patient care and improve patient outcomes for pancreatic disease patients.”

“The NPF registry will be an incredible tool that captures both patient and physician entered data,” stated Dr. Douglas Pleskow, Co-Director GI Endoscopy at Beth Israel Deaconess Medical Center. “Nothing else like this exists and it will be of great benefit for patients and physicians.”

“The NPF registry will be a true leadership initiative as it leverages a unique cutting edge technology that will allow us and our institutional partners to analyze, visualize, and query the data in a way that will be extremely valuable to the patient community we serve,” said Jane Holt, NPF Co-Founder. The registry technology is provided by Remedy Informatics, whom NPF chose after an exhaustive search of registry providers.

The NPF is a charitable foundation dedicated to providing hope for those suffering from all forms of pancreatic disease. Founded in 1997, through a combination of seed grants and advocacy efforts, to-date the NPF has awarded more than $2.8 Million in grants to fund 92 groundbreaking research projects. Additionally, through its advocacy efforts and the research outcomes of its grants, the NPF has supported initiatives that have led to millions of dollars of additional research funding by the National Institutes of Health (NIH) and other institutions.

About The National Pancreas Foundation

Founded in 1997, the National Pancreas Foundation provides hope for those suffering from pancreatitis and pancreatic cancer through funding cutting-edge research, advocating for new and better therapies and providing support and education for patients, caregivers and healthcare professionals. The NPF is the only foundation dedicated to patients suffering from all forms of pancreas disease. The NPF advances its mission through a combination of research grants and advocacy. With the help of the Foundation’s Grant Review Committee, the NPF provides grants to support researchers seeking to make scientific advancements in the field of pancreatic disease. Since its inception, the NPF has given more than $2.8 Mil-lion to fund 81 groundbreaking research projects, leading to millions of dollars in additional research.

Media Contact

Matthew Alsante, Executive Director, National Pancreas Foundation, (866) 726-2737,

To download the press release, please click NPF Press Release – Patient Registry.