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History The National Familial Pancreas Tumor Registry (NFPTR) is a research registry that was established at Johns Hopkins University in 1994 by Dr. Ralph Hruban. He started the Registry so that scientists and doctors could learn more about pancreatic tumors, including why they seem to run in some families. Research has shown that approximately 5-10% of all pancreatic cancers are due to a familial tendency. Gathering information from these families provides scientists with a unique opportunity to study the cause of cancer of the pancreas. This information may ultimately help devise new ways to find pancreatic cancers earlier and develop better treatments for pancreatic cancer. The NFPTR team includes clinicians and scientists from a variety of fields including epidemiology, pathology, gastroenterology, molecular biology, genetics, cytogenetics, surgery and oncology. Having such a wide variety of clinicians and researchers who have dedicated their careers to learning more about pancreatic cancer truly enables the Registry to study pancreatic tumors from all angles. This approach has led to great advances in the field of pancreatic cancer research, but we still have a lot to learn. The Current State As of November 1, 2005, 1508 families have enrolled in the NFPTR. In 622 of these families more than one close relative (i.e. parent/child or siblings) have been diagnosed with pancreatic cancer. In 886 of these families a single member of the family has been diagnosed with pancreatic cancer. These families are vital to our research into pancreatic cancer and we are very appreciative for all of their assistance. If your family has been affected by pancreatic cancer, we would certainly welcome your participation in our registry. The actors Michael Landon, Jr. and Rodney Van Johnson are advocates for Pancreatic Cancer Research and have written letters in support of our registry. How to Join the NFPTR: To join the registry we ask that your family complete a brief questionnaire regarding your family's cancer history. In selected cases we will request that a small amount of blood (4 tablespoons) be sent for research studies. If you would like to request a questionnaire to complete and register your family with the NFPTR, please click here. The NFPTR is protected by a Certificate of Confidentiality (NCI-01-062) from the National Institutes of Health, Department of Health and Human Services. This Certificate helps us to protect the very personal information that you provide to our registry. How to Stay Informed: We created the NFPTR NEWS to keep our families up to date on the pancreatic cancer research being done at Johns Hopkins. Registry participants will receive a copy of our newsletter each December. We hope that you find this newsletter informative and we encourage Registry participants to submit contributions to our future editions. For More Information: If you would like more information about the registry or if you would like to refer a family to the NFPTR, please contact:
Alison Klein, Ph.D., Director
or Emily Palmisano, Coordinator The National Familial Pancreas Tumor Registry Johns Hopkins School of Medicine 1550 Orleans Street, CRBII 341 Baltimore, MD 21231 410-955-3502(telephone) 410-614-0671 (fax) Or send us an email directly at pancreas@jhmi.edu To receive a questionnaire to register your family The Team The NFPTR Team is composed of a talented group of researchers and clinicians who bring with them enthusiasm and a unique approach to studying pancreatic tumors and their precursors. Here is the team:
Dr. Alison P. Klein is the director of the registry. Her main focus is the study of the epidemiology of pancreatic cancer including identifying individuals most at risk of developing pancreatic cancer as well as understanding the other types of cancer that may run in families together with pancreatic cancer. Emily Palmisano is the coordinator of the NFPTR. Ms. Palmisano graduated from St. Mary's College in Maryland in 2005 with a Bachelors of Arts in Biology. Ms. Palmisano joined the NFPTR Team in July of 2005 and has been an excellent fit for the registry. Marian Raben is a Physician's Assistant who joined the team in August 2005 to help educate patients regarding the various ongoing research studies in the field of pancreatic cancer. Ms. Raben trained as a Physician's Assistant at St. Louis University and received her Masters in Health Sciences from Towson University. Dr. Ralph Hruban is the director of GI/Liver Pathology at Johns Hopkins. His research focuses on the precursor lesions that give rise to invasive pancreatic cancer. Just as colon polyps can give rise to colon cancer, Dr. Hruban has shown that small precursor lesions in the pancreas can give rise to pancreatic cancer. Dr. Anirban Maitra is an Assistant Professor of Pathology. His research focuses on the application of cutting-edge technologies to the study of pancreatic cancer. Dr. Maitra helped design and develop the first gene chip to sequence the mitochondrial genome, and more recently he has been studying the role of the "hedgehog" pathway in pancreatic cancer. Dr. Christine Iacobuzio-Donahue is an Assistant Professor of Pathology. Dr. Iacobuzio-Donahue's research interests include understanding why pancreatic cancer metastasizes (spreads) to other organs. To help her further our understanding of metastatic pancreatic cancer she initiated the Gastrointestinal Cancer Rapid Medical Donation Program. Dr. Michael Goggins is an Associate Professor of Pathology and Medicine. His main research focus includes improving the early detection of pancreatic cancer. To this end, he is working to identify new molecular markers for the early detection of pancreatic cancer. Dr. Marcia Canto is an Associate Professor of Medicine. Dr. Canto's efforts focus on screening individuals that have been shown to have a high risk of developing pancreatic cancer using Endoscopic Ultrasound (EUS). Dr. Scott Kern is a Professor of Pathology and Oncology. He is interested in fundamental gene discovery and in translating these gene discoveries to better patient care. For example, his current interests include treating pancreatic cancers that arose in patients with BRCA2 gene mutations with a chemotherapeutic agent (mitomycin C) that specifically targets changes caused by BRCA2 gene mutations. Dr. Jim Eshleman is an Associate Professor of Pathology. He develops new technologies that can be used to detect early pancreatic cancer. For example, Dr. Eshleman developed the LigAmp technology and LigAmp is now being evaluated as an early detection test for pancreatic cancer. Dr. Daniel Laheru is an Assistant professor of Oncology. His is very active in the clinical treatment of patients with pancreatic cancer and he also conducts research on new immunological methods (vaccines) to treat pancreatic cancer. Dr. Elizabeth Jaffee is a Professor of Oncology. She has developed a vaccine for the treatment of pancreatic cancer. This vaccine is made from the cancer cells themselves. Jennifer Axilbund is the genetic counselor who works closely with the National Familial Pancreas Tumor Registry. She not only counsels individuals with a strong family history of pancreatic cancer, but she is also doing research on how best to counsel these patients. Dr. Constance Griffin is an Associate Professor of Pathology. Dr. Griffin studies pancreatic cancer at the chromosome level using technologies such as karyotyping. Dr. Kurtis Campbell is an Associate Professor of Surgery. He has been selected to provide continued leadership to the surgical efforts against pancreatic cancer at The Johns Hopkins Hospital. Dr. John Cameron is a Professor of Surgery and an expert in the field of Pancreatic Cancer surgery. Dr. Cameron has probably performed more Whipple surgeries (removal of the head of the pancreas) than any other surgeon in the world. Dr. Steven Leach is a Professor of Pathology. Dr. Leach uses zebra fish models to study the developmental biology of the pancreas and to determine which genes are important for the development of pancreatic cancer. The Research Researchers associated with the NFPTR have been involved in a number of research studies that have advanced our understanding of pancreatic cancer. Below are a few of the key findings of NFPTR Researchers: For a more complete listing of the pancreatic cancer research being done at Hopkins, please see our Bibliography of Pancreas Cancer Research at Hopkins. |
