OHSU

Registries

OHSU Cancer Registry

Established in the early 1960s, the OHSU Cancer Registry keeps detailed demographic, diagnostic, treatment and outcomes data on all patients diagnosed with cancer, and all primary brain and central nervous system tumors, benign or malignant. The data is used in a variety of ways, including learning how well different treatments work, analyzing the outcomes of treatment and sending data to state and national databases.

For more information, please call 503 494-6367 or contact

Cardiothoracic Surgery

Outcomes in General Thoracic Surgery Database

Level of training and experience are believed to directly impact on outcomes in general thoracic surgery. In particular, how often a practitioner performs a specific procedure is thought to directly impact the quality of care provided. This has been difficult to evaluate due to the lack of outcomes data, in particular from private and rural hospitals. By using a federally managed database designed to obtain a nationwide sampling across all hospitals, the Outcomes in General Thoracic Surgery Database seeks to determine a difference, if any, in the quality of care delivered by cardiac surgeons, thoracic surgeons, and general surgeons for non-cardiac, thoracic surgical procedures. All discharged patients from OHSU starting in 2004 are included in the database.

For more information, please contact

General Surgery

Oregon Colorectal Cancer Registry (OCCR)

PRINCIPAL INVESTIGATOR: Vassiliki Tsikitis, M.D.

STUDY PURPOSE: The objective of the Oregon Colorectal Cancer Registry (OCCR) is to establish a centralized data resource that will aide in the identification, care and study of individuals who are at increased risk of developing colorectal cancer.

The specific aims of the OCCR are to:

  • Collect clinical information and related biological specimens from patients with a family history of colorectal cancer in order to provide a resource for future research.
  • Identify and enroll those in the colorectal cancer at-risk and high-risk population that would benefit from improved screening recommendations and referral to genetic services.
  • Serve as a referral and educational resource for physicians and other medical personnel to better understand inherited colorectal cancer syndromes and their related screening recommendations.
  • Facilitate a multidisciplinary approach to patient care at OHSU that will combine the disciplines of surgery, oncology, and gastroenterology with Medical Genetics, specialized nursing, and supportive care services.

MEDICAL CONDITION(S): Hereditary colorectal cancer syndromes

ELIGIBILITY CRITERIA:

  • The subject must be at least 18 years of age to enroll in the registry.
  • The subject must be competent to consent to the study and to respond to an epidemiology questionnaire.
  • The subject must have at least two, first or second-degree (grandchild, niece, nephew, aunt, uncle, grandparent) biological relatives, living or deceased, diagnosed with colorectal, endometrial or bladder cancer at or before 60 years of age.
    OR
  • The subject must have at least one first-degree (child, sibling, parent) biological relative, living or deceased, diagnosed with colorectal cancer diagnosed before age 50.
    OR
  • The subject must have a personal history of any HNPCC related cancer or a diagnosis of 10 or more colon polyps diagnosed at or before age 60.

Subjects from any family where a known inherited syndrome has been detected, or is suspected, will also be eligible to participate in the OCCR, so long as the first two study criterions are met. For the purposes of this registry, known colorectal cancer syndromes are hereditary non-polyposis colorectal cancer (HNPCC), familial adenomatous polyposis (FAP), attenuated familial adenomatous polyposis (AFAP), juvenile polyposis (JP), Peutz-Jeghers Syndrome (PJS), and MYH Associated Polyposis (MAP).

For more information, call 503 494-8820 or

Esophageal Cancer and Related Diseases (ECRD)

PRINCIPAL INVESTIGATOR: Paul Schipper, M.D.

STUDY PURPOSE: The specific aims of the ECRD are to:

  • Create a comprehensive registry with clinical information as well as tissue & blood specimens to learn more about esophageal cancer and related diseases such as acid reflux and Barrett’s esophagus.
  • Construct a database including the clinical details, procedures and outcomes of patients who have had esophageal surgery.

Tissue and blood samples collected in this study will be used to build a tissue/blood bank where they are stored for future research. This tissue and blood will be stored indefinitely here at OHSU and will be used for studies related to the development of cancer of the esophagus, stomach, or upper intestine. Part of this research will involve looking at genes that may predispose people to getting cancer of the esophagus, stomach, and upper intestine.

In addition to the tissue and blood collection, we will gather information that may be related to these diseases. This information will also be stored in a database. This database together with the tissue and blood bank will make a data repository that will be used to learn more about the natural history of esophageal cancer and related diseases.

MEDICAL CONDITION(S): Esophageal cancer and related diseases such as heartburn, GastroEsophageal Reflux Disease (GERD), or extraesophageal reflux symptoms such as chronic cough, sinusitis, bronchitis, hoarsness, or chronic throat clearing. Other conditions that may be related to heartburn and reflux are Barrett’s esophagus, esophageal cancer, or stomach cancer.

ELIGIBILITY CRITERIA:

  • The subject must be at least 18 years of age to enroll in the registry.
  • The subject must be diagnosed with the conditions described, competent to consent to the study, and willing to respond to follow up questionnaires concerning their conditions.

For more information, call 503 494-8820 or

Oregon Pancreas Tumor Registry (OPTR)

PRINCIPAL INVESTIGATOR: Brett Sheppard, M.D.

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.

The specific aims of the OPTR are to:

  • Collect clinical information 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 research projects.
  • Identify and enroll those in the pancreas cancer at-risk and high-risk population that would benefit from improved screening recommendations and referral to genetic services.
  • Serve as a referral and educational resource for physicians and other medical personnel to better understand inherited pancreas syndromes and their related screening recommendations.

MEDICAL CONDITION(S): Pancreas cancer, pancreatic cancer related syndromes and chronic pancreatitis.

ELIGIBILITY CRITERIA:

  • 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.
  • The subject must be competent to consent to the study and to respond to a family history questionnaire.
  • 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
  • The subject must have at least one first-degree (child, sibling, parent) biological relative, living or deceased, diagnosed with pancreatic cancer diagnosis.
    OR
  • The subject must have a personal or family history of chronic pancreatitis.
    OR
  • 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
  • The subject has a personal history of pancreas cancer.

For more information, call 503 494-8820 or

Surgical Oncology

Oregon Index of Endocrine Neoplasias (ORION)

PRINCIPAL INVESTIGATOR: Mira Milas, M.D.

STUDY PURPOSE: The purpose of the Oregon Index of Endocrine Neoplasias (ORION) is to capture clinical information in a complete manner and to establish a centralized resource of clinical information that will aid in the identification, care, and study of clinical and outcomes characteristics of individuals who develop benign and malignant endocrine tumors of the thyroid, parathyroid and adrenal glands, as well as of the neuroendocrine system. Additionally, ORION will help to:

  • Provide a clinically relevant registry of patients with thyroid cancer, the #1 malignancy in the United States in terms of rising incidence rates.
  • Track endocrine cancer diagnosis and treatment outcomes.
  • Provide an organized way to follow patients with rare endocrine conditions and the need for complex operations.
  • Be a vehicle for translational clinical research related to pathophysiology of endocrine disorders.
  • Be a vehicle for clinical research that may lead to improved patient care.
  • Be a source of information related to specialty-specific outcomes measures, standards of care, and innovative clinical practices.
  • Develop into the major index of information about endocrine tumors in Oregon.

For those participants who have already completed their medical care at OHSU, information will be collected retrospectively into ORION. For participants with ongoing or new visits for medical care at OHSU, we will ask written permission because, in addition to collecting information from medical care visits, we will ask them to allow us to collect a small tissue sample or a small volume of blood that may have been removed or taken as part of their treatment. For this registry no subject will be excluded on the basis of gender, racial or ethnic origin.

The Oregon Liver Tumor Registry (OLTR)

The objective of the Oregon Liver Tumor Registry (OLTR) is to establish a centralized community resource that will aide in the identification, care, and study of individuals who have been diagnosed with liver disease or tumors, so that an overall reduction in morbidity and mortality from liver cancer is achieved. This is accomplished by identifying individuals with a personal diagnosis of liver tumors, either primary or secondary in nature, within the Oregon Health Sciences University (OHSU) system and within the general public. The OLTR focuses on the study of patients that are at known risk for developing liver cancer, particularly patients with cirrhosis from alcohol, viral hepatitis or other causes. Medical history information and biological specimens will be collected from subjects who are interested in joining the OLTR. Overtime, a centralized research resource is being developed, allowing for participation in original and collaborative research studies.

For more information, please contact

Outcomes following Hepatic Resection Database

The Outcomes following Hepatic Resection Database is a retrospective chart review containing patients treated with hepatic resection at Oregon Health and Science University starting in January 2003. Hepatic resection has been an important procedure to treat liver diseases and the only method to provide total cure for certain liver cancers. Ample previous research showed improved patient survival after hepatic resection in recent years. However, since most studies focused on specific liver illnesses, there has been little research on providing a more thorough surgical outcome evaluation among various liver diseases. The Outcomes following Hepatic Resection Database is a more inclusive database containing patients of different kinds of liver diseases undergoing hepatic resection. This database will serves as an important resource for comprehensive liver resection outcome research in the future.

For more information, please contact

Melanoma Database

The Sentinel Lymph Node Working Group (SLNWG), consisting of investigators from around the world, was formed to prospectively collect and maintain follow-up data on patients with cancers including melanoma, Merkel cell carcinoma, and other cutaneous cancers. The group’s main goal is to use collected data to determine outcomes and establish patterns of recurrence for patients undergoing selective sentinel lymph node dissection (SLND). The SLNWG has become a multi-investigational cooperative mini-group that performs highly focused biological and/or therapeutic studies on melanoma and other illnesses with similar biological behaviors. SLNWG provides ongoing analysis of this database in a coherent fashion and use findings to develop new studies and therapeutic protocols for peer-reviewed publication.

Collection Information The subject population is primarily diagnosed with Stage I or II melanoma, Merkel cell carcinoma, or other cancers that will undergo selective SLND as standard treatment. The proposed number for this study is open-ended and there are no further inclusion or exclusion criteria.

Patient medical records are reviewed to collect information from the following categories:

  • Melanoma patient demographics
  • Melanoma primary description
  • Melanoma node dissection
  • Melanoma follow up
  • Melanoma recurrence

For more information, please contact

Trauma, Critical Care & Acute Surgery

Trauma Research Associates Program (T-RAP)

PRINCIPAL INVESTIGATOR: Laszlo Kiraly, M.D.
A Prospective Registry of Complications in Critically-Ill Trauma and Surgical Patients

STUDY PURPOSE
The purpose of this study is to determine the incidence of and the risk factors for acquiring venous thromboembolism (DVT and/or PE), pneumonia, and wound infections in trauma and acute care surgery patients admitted to our Level I trauma center and to create a secure research repository for use in future retrospective research studies.

SPECIFIC AIMS
  • Identify risk factors for these complications and assign a relative risk for each factor
  • Perform comparative effectiveness analyses of various complication prevention practice management guidelines
  • Perform comparative effectiveness analyses of the treatment of established DVT, PE, pneumonia, and wound infection in patients suffering multisystem trauma
  • Examine cost-data and patient-centered experiences related to the type of prophylactic measures utilized and the treatment of VTE complications including post-phlebitic syndrome and pulmonary complications associated with PE
  • Define the role of surveillance for post-injury VTE
STUDY PROCEDURE
We propose to compile a prospective registry of complications in critically-ill patients admitted to our TICU. The data we will collect includes patient demographics, diagnoses (reason for ICU admit), mechanism of injury, blood pressure and heart rate, fluid intake and output (I/O), central line information, lab values, medications, transfusions, deep vein thrombosis (DVT) workup, DVT prophylaxis, DVT treatment, and surgeries and complications.  Patients will be tracked on admission and then daily thereafter for development of ICU complications and associated risk factors. We plan to retrospectively analyze the data from our registry to determine which factors may place patients at higher risks for ICU associated complications.

This study uses existing charts and medical records of the patients admitted to the Trauma and General Surgery services. The aim of this study is to analyze data from all patients on these services over a five year period (2013 – 2017). We estimate that we will accumulate 3,000 patients per year over that period of time based on the average number of admissions to the ICU's each year.

For more information, call Erika Simeon at 503-494-4315 or email

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