Participant Overview of the GREAT Study
You have chosen UPMC as a world-class medical system specializing in cutting edge treatments and new research. One or more of your physicians is recognized as a physician-scientist and co-investigator in a major initiative called the Genomic Resources for Enhancing Available Therapy Study. The purpose of the study is to develop a database of information to assist physicians in gaining new knowledge about the care and treatment of conditions such as yours. This approach is needed for complex diseases, which are caused by more than one factor. In a complex disease, a combination of factors in the body and environment come together as a “perfect storm” to cause disease. As a result of these many different factors, individuals with complex diseases also have differences in disease severity, different complications, and different responses to treatment.
This study will help with the advancement of Precision Medicine, which is medical care aimed at giving the right treatment to the right patient in the right dose and the right time. By collecting information from medical records, gathering information from questionnaires, and analyzing genetic information, we can evaluate how different factors may influence the development, progression and complications of complex diseases. From this information, we hope to better identify the underlying causes of complex medical conditions, improve the treatment options, and assist physicians in providing better clinical care at UPMC.
The name of the study, ‘Genomic Resources for Enhancing Available Therapy Study’, can be broken down to further explain the study. The term “genomic resources” refers to the inherited factors (genes) that make individual people different from each other. We obtain this information by collecting biological samples. The term “available therapy” is used to recognize that this study seeks to gain new information that will be useful in choosing an effective treatment now rather than waiting for new treatment to be invented. The term “study” indicates that researchers will be evaluating the collected information to link specific symptoms in individual patients the underlying problems. These advances should lead to a better understanding of diseases such as yours, and lead to better treatment strategies in the future.
To reach this goal, our physicians are asking their patients to consider participating in this study. By consenting to participate in this study, we are asking for permission for three research activities:
- First, researchers will collect and study your past, present and future medical records.
- Second, extra blood and tissue that is collected for clinical tests can be used by researchers to study and for genetic testing. With your permission we may ask to collect additional blood.
- Finally, we are asking for permission to contact you for follow-up.
We may request you to fill out future questionnaires to obtain more information relevant to your care. Depending on your medical history, we may contact you in the future with new information such as a clinical trial in which you may be interested in participating.
Before signing a consent form, each patient will have the opportunity to have their questions about the study answered. Some frequently asked questions (FAQ) and answers are provided; some patients have additional questions and may wish to speak directly with a research team member before signing the consent either on line, or in person.