Associates from The Pacific Heart, Lung & Blood Institute (PHLBI) are conducting a research study and are seeking study participants who wish to donate their tissue specimen(s) and personal health information for current and future research at PHLBI.
Diseases of the heart, lung and blood affect a large number of people in the U.S. and throughout the world each year. Due to a large number of people involved, it is imperative that both tissue samples and corresponding health information are collected from as many patients as possible in order to understand 1) the normal biology, 2) the natural history of diseases, 3) outcomes from current treatments, and 4) the advantages and disadvantages of potential future novel therapies.
The primary objective of this study is to collect tissue specimen and corresponding health information from study participants who have diseases of the heart, lung, and blood, as well as normal volunteers without disease, who wish to donate their tissue specimen for current and future research at the PHLBI.
With access to these tissue specimen(s) and corresponding health information, research projects within the medical community will be able to identify novel disease treatments.
Studies may be performed to test specific characteristics of your normal, tumor, and immune cells, and to determine the activity of novel medications and treatments. In certain instances, some tests may be performed on the chromosomes and genes of your tumor. The knowledge gained from these studies as well as your tissues may be used to develop new commercial products in the fight against cancer.
You can consent to donate any of the following:
How will information about me and my participation be kept confidential?
At the time of the initial study, your evaluation and/or during subsequent encounters, health information will be collected and entered into a secured database maintained at PHLBI. All data will be de-identified, ensuring anonymity as required by HIPPA regulations and laws.
Are there any benefits if I participate?
There will be no direct benefit to you from participating in this study. This study is not being done to improve your condition or health. You will not have access to specific information learned from your tissue and/or blood specimens. You have the right to refuse to participate in this study at any time. All who donate who participate will be named an “honorary PHLBI Associate Researcher” and given a complimentary pin with that title.
How do I indicate my agreement to participate?
If you agree to participate in this study you should sign the consent agreement. You will be given a copy of the research consent form and the Research Participant’s Bill of Rights to keep. You will be asked to sign a separate form authorizing access, use, creation, or disclosure of health information about you.
The Research Team:
You may contact Lien Hua-Feng, RN, MSN, NP-C at 310-818-1304 with any questions or concerns about the research or your participation in this study. You can also call (310) 478-4678 to reach our office.
What are the next steps if I choose to participate in this research study?