OHSU

IRB #

IRB00003609

Title

Oregon Pancreas Tumor Registry

Principal Investigator

Brett Sheppard

Study Purpose

The objective of the Oregon Pancreas Tumor Registry (OPTR) is to establish a centralized community resource that will aide in the identification, care and study of individuals who are at increased risk of developing pancreas cancer, so that an overall reduction in this cancer is achieved.

1) Collect pedigree information, epidemiological data and related biological specimens from patients with a family history of pancreas cancer, related pancreas cancer syndrome or chronic pancreatitis, in order to provide a resource for future interdisciplinary and collaborative research.
2) Identify and enroll the pancreas cancer at-risk and high-risk population in the state of Oregon and beyond that would benefit from improved screening recommendations and referral to genetic services.
3) Serve as a referral and educational resource for physicians and other medical personnel so that a better understanding of inherited pancreas syndromes and their related screening recommendations can be had.

Medical Condition(s)

pancreas cancer, pancreatic cancer related syndromes and chronic pancreatitis

Eligibility Criteria

1)The subject must be at least 18 years of age to consent to joining the registry. However, in the case of children, a legal guardian who is 18 years of age or older must be willing to provide consent in order for the child to participate in registry specimen collections. Where applicable, consent from both parents will be sought prior to participation of a minor in the registry. Minors will not be permitted to act as the family proband and will only be allowed to consent to join the registry if there is an established, consented family proband.

2) The subject must be competent to consent to the study and to respond to a family history questionnaire.

3) The subject must have at least two, first (child, sibling or parent) or second-degree (grandchild, niece, nephew, aunt, uncle, grandparent) biological relatives, living or deceased, with pancreatic cancer diagnosis.

OR

4) The subject must have at least one first-degree (child, sibling, parent) biological relative, living or deceased, diagnosed with pancreatic cancer diagnosis.

OR

5) The subject must have a personal or family history of chronic pancreatitis.

OR

6) The subject comes from a family with a known or suspected hereditary cancer syndrome which predisposes family members to an increased risk of pancreas cancer development.

OR

7) The subject has a personal history of pancreas cancer.

Age Range

6 - 99

Healthy Volunteers Needed

Yes

Duration of Participation

Indefinite. The study has no end date.

Minors Included

Yes

Contact

Miriam Douthit
503-494-8820
optr@ohsu.edu

Sponsor

n/a

Recruitment End

01/01/2017

Compensation Provided

No


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