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RARE BLOOD DISORDER SURVEILLANCE PROJECT

STUDY SPONSORS:  

Public Health Agency of Canada with additional funding from CSL/Behring

STUDY OVERVIEW

The recently developed Network of Rare Blood Disorders has asked the Public Health Agency of Canada to expand the current archive (Blood Borne Pathogens Surveilance Project)to include other patient groups who are exposed to blood products.  The project described here will expand the current archive to establish a secure bank of samples.

STUDY OBJECTIVE
The objectives are to search for:

1. known and emerging adverse reactions from the treatment of Rare Blood Disorders with blood products and other treatments, focussing on blood borne pathogens at first
2. the genetic changes that predispose people to damage from these adverse reactions, such as the hemachromatosis mutations in people with hepatitis C, or iron overload from transfusion
3. known and emerging genetic changes causing or modifying the underlying rare blood disorder.

PROTOCOL AND RELATED FORMS

Rare Blood Disorder Protocol V4 09 June 06.
Informed Consent Form
Pediatric Assent Form

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The Centre of Excellence for Gastrointestinal Inflammation and Immunity Research

STUDY SPONSORS
Canadian Foundation for Innovation
Alberta Infrastructure
University of Alberta
Alberta Health Services
University of Alberta Hospital
Zeidler Family Gastrointestinal Health Centre

STUDY OVERVIEW

The Collection Of Blood, Urine, Stool, DNA, Ascites Fluid, Liver Tissue And Intestinal Tissue Samples Deposited Into A Secure Bio-Bank Along With Subject Demographics And Health Information Deposited Into A Secure Data-Bank That Will Collectively Be Used To Examine The Roles Of Bacteria And Viruses In Gastrointestinal And Liver Diseases.

STUDY OBJECTIVES

All persons undergoing routine upper and lower endoscopic procedures, as required by their doctor will be given the opportunity to participate in CEGIIR. Intestinal biopsies taken during the endoscopy will be used by researchers to study the roles of bacteria and viruses in gastrointestinal and liver diseases. Patients will be asked to donate a sample of blood, urine and DNA that will help researchers identify why some people get the diseases from bacteria and viruses and other people don’t. The purpose of storing the blood, urine, DNA and the intestinal tissues is to allow the study of groups of samples, from several subjects and from several environmental regions, at one time.

Informed Consent
Patient Recruitment Letter
Patient Questionnaire

CEGIIR WEBSITE

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