Jefferson Pancreas Tumor Registry
The Jefferson Pancreas Tumor Registry (JPTR), to which patients and family members can provide data on familial and environmental aspects of pancreatic cancer on a voluntary basis, was established to further study the frequency of pancreatic cancer in families with a history of the disease and to identify environmental and occupational risk factors to which patients may have been exposed. Jefferson physicians are also using the results of genetic testing obtained through the Registry to determine the most effective targeted therapies.
In 2010, the JPTR received an important grant from the American Cancer Society. The valuable information collected by JPTR aids our researchers in their search for common denominators in some types of pancreatic cancer.
We are committed to building on the knowledge base for pancreaticobiliary diseases. As leading investigators of the molecular genetics and environmental and lifestyle links, we are working to improve early detection of pancreatic cancer with more effective screening procedures and leading-edge research into the molecular genetics of these tumors. We are also deeply engaged in research to identify subtypes of the cancers and to create individualized therapies, including targeted chemotherapy, vaccine therapy and nanoparticle therapy.
What are the Benefits?
You and your family may or may not benefit directly from your participation in the Jefferson Pancreas Tumor study. However, there may be a benefit to society, in general, from a better understanding of the risk factors for pancreatic cancer to increased knowledge of the occurrence of pancreas tumors in families. Any information obtained from this research study that may be important to your health or disease progression will be shared with you. Additional benefits from your participation in this study may include:
- Identification of risk factors for pancreas cancer
- Discovery of biomarkers that can be used in early detection of pancreas cancer and for screening high-risk groups
- Identification of genes that may aid in individualizing treatment of pancreatic cancer, as well as identifying new treatment strategies.
The Jefferson Pancreas Tumor Registry is a longitudinal study in which participants may engage in long-term follow-up and receive information regarding scientific and epidemiological breakthroughs in pancreatic cancer.
How Do I Join?
Participants are asked to complete a detailed questionnaire (available through the links below or through the mail) and may be asked to submit a blood sample and/or cheek swab. The procedure for collection of blood samples and/or cheek swabs is outlined in detail in the Informed Consent form, which participants must read and sign before completing the questionnaire.
There are three versions of the Registry questionnaire:
- Questionnaire for patient (PDF) — To be completed by patient
- Questionnaire for a family member (PDF) — To be completed on behalf of a patient
- Questionnaire for nonaffected family members (PDF) — To be completed by nonaffected family members who are first-degree relatives (parents, siblings, offspring) or spouses
To participate in this study, a signed informed consent (PDF) must accompany each completed questionnaire.
The questionnaires are designed to collect the family health history of a patient with pancreatic cancer or a nonaffected family member and to document exposure to occupational and environmental factors, such as residential radon, asbestos and second-hand tobacco smoke.
It is important to sign and return the Informed Consent Form. A signed informed consent form is required from every participant. Each questionnaire takes approximately 30 minutes to complete.
To Contact the Jefferson Pancreas Tumor Registry
To reach a staff member, please call 215-955-5542 or send an e-mail to Theresa.Yeo@jefferson.edu.
The Registry coordinator can:
- Answer questions about the study
- Assist you in completing the questionnaires
- Mail you a questionnaire
- Put you in touch with one of the investigators
Our mailing address is:
Jefferson Pancreas Tumor Registry Coordinator
Thomas Jefferson University Hospital
1015 Walnut Street
Philadelphia, PA 19107