Confronting Pancreatic Cancer

CAPS 3 Study for those at High Risk for Pancreatic Cancer

Hilary Cosby, RN, CGRN
CAPS Research Nurse Coordinator
Johns Hopkins University
caps3@jhmi.edu

Thank you for your possible interest in the pancreatic cancer screening study (CAPS 3). We will be screening individuals with a high risk of developing pancreatic cancer in early 2007. Those high risk individuals fall into the following categories:

Diagnosed Peutz-Jeghers syndrome (participant age 30-80)

Verified BRCA2 or FAMMM/p16 gene mutations (participant age 40-80)

Verified family history of pancreatic cancer involving: 2 first degree relatives (FDR) (sibling, parent, child), or if 3 relatives at least 1 must be a FDR and the others a cousin or grandparent on the same family side. (participant age 40-80)

Interested participants should not have pancreatic cancer or suspicious symptoms. They should also have not had pancreas specific imaging protocol performed in the past three years.

This study will cover the cost of a genetic counseling session and pancreatic screening using MRI, CT and endoscopic ultrasound. One of the goals of the study is to find the best and most sensitive screening modality for very small pre-cancerous pancreatic lesions, and to treat these small lesions before they turn into cancer. Another study goal is to search for a gene mutation that is linked with the development of pancreatic cancer.

The study will take place over a two day period (Tuesdays and Wednesdays). Johns Hopkins will be the first site in this multi-site two year study. The Mayo Clinic, MD Anderson and UCLA will be other sites included in the study. The study can not pay for travel or lodging expenses.

To assist with the screening criteria we would suggest you join the National Familial Pancreatic Tumor Registry (NFPTR) if you have not done so already. This is a free registry. The website is listed below. If it looks of interest to you please request their questionnaire.

http://pathology2.jhu.edu/pancreas/nfptr.cfm

If you feel you qualify for this study, please contact Hilary Cosby, RN, CGRN, CAPS Research Nurse Coordinator, Johns Hopkins University. We will include you on our mailing list for further information on this study. We anticipate enrolling participants in early 2007.

If you do not meet the inclusion criteria for this study and would like pancreatic screening, we can help refer you to an physician who performs endoscopic ultrasound in your region.

Thank you again for your interest in the study and helping to find early treatment for this deadly disease.

Hilary Cosby, RN, CGRN
CAPS Research Nurse Coordinator
Johns Hopkins University
hcosby1@jhmi.edu

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	CAPS 3 Study for those at High Risk for Pancreatic Cancer Hilary Cosby, RN, CGRN CAPS Research Nurse Coordinator Johns Hopkins University caps3@jhmi.edu Thank you for your possible interest in the pancreatic cancer screening study (CAPS 3). We will be screening individuals with a high risk of developing pancreatic cancer in early 2007. Those high risk individuals fall into the following categories: Diagnosed Peutz-Jeghers syndrome (participant age 30-80) Verified BRCA2 or FAMMM/p16 gene mutations (participant age 40-80) Verified family history of pancreatic cancer involving: 2 first degree relatives (FDR) (sibling, parent, child), or if 3 relatives at least 1 must be a FDR and the others a cousin or grandparent on the same family side. (participant age 40-80) Interested participants should not have pancreatic cancer or suspicious symptoms. They should also have not had pancreas specific imaging protocol performed in the past three years. This study will cover the cost of a genetic counseling session and pancreatic screening using MRI, CT and endoscopic ultrasound. One of the goals of the study is to find the best and most sensitive screening modality for very small pre-cancerous pancreatic lesions, and to treat these small lesions before they turn into cancer. Another study goal is to search for a gene mutation that is linked with the development of pancreatic cancer. The study will take place over a two day period (Tuesdays and Wednesdays). Johns Hopkins will be the first site in this multi-site two year study. The Mayo Clinic, MD Anderson and UCLA will be other sites included in the study. The study can not pay for travel or lodging expenses. To assist with the screening criteria we would suggest you join the National Familial Pancreatic Tumor Registry (NFPTR) if you have not done so already. This is a free registry. The website is listed below. If it looks of interest to you please request their questionnaire. http://pathology2.jhu.edu/pancreas/nfptr.cfm If you feel you qualify for this study, please contact Hilary Cosby, RN, CGRN, CAPS Research Nurse Coordinator, Johns Hopkins University. We will include you on our mailing list for further information on this study. We anticipate enrolling participants in early 2007. If you do not meet the inclusion criteria for this study and would like pancreatic screening, we can help refer you to an physician who performs endoscopic ultrasound in your region. Thank you again for your interest in the study and helping to find early treatment for this deadly disease. Hilary Cosby, RN, CGRN CAPS Research Nurse Coordinator Johns Hopkins University hcosby1@jhmi.edu


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