Raymond Wong, PhD, and 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 the 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(s) (serum, pleural and pericardial fluid, blood cells, urine, buccal swabs, saliva, sputum, exhaled breath, and tissue samples) 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(s) and corresponding health information for current and future research at the PHLBI. Both normal and diseased tissue samples will be collected and placed into a database and maintained at 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.
How can you help?
You can consent to donate any of the following:
- Blood Collection. You may have your blood drawn by our Nurse Practitioner at PHLBI or by your physician(s) and mail them to PHLBI.
- Tissue, Pleural and Pericardial Fluid Collection. During surgery, samples of your normal and diseased tissues will be removed as required during standard treatment. These samples are processed and stored in the pathology department at the facility where you had your surgery done. You may consent and donate a portion of your tissues not needed by the pathologists by mailing them to PHLBI.
- Urine Collection. Each urine sample will be approximately 30 mL (about 1 ounce or 2 tablespoons). After collection, the urine will be frozen and entered into a computerized tissue bank.
- Buccal Swab, Sputum, Exhaled Breath, and Saliva collection. A buccal swab (inside of a person’s cheek), sputum, exhaled breath and saliva may be collected using specific collection devices.
- Clinical Specimen Analysis. Your normal, tumor, and immune cells may be grown in the laboratory for months or even years and may be used by scientists at other institutions for experimental research studies in the future.
How will information about me and my participation be kept confidential?
At the time of initial study, your evaluation and/or during subsequent encounters, health information will be collected and entered into a secured database maintained at the Pacific Heart, Lung and Blood Institute (PHLBI). All data will be de-identified, ensuring anonymity as required by HIPPA regulations and laws.
How long will you be expected to remain in the study?
This study will last indefinitely.
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.
Will I be paid for my participation?
You will not be paid for your participation in this research study. You will not be reimbursed for any out of pocket expenses, such as medical bills, parking and shipping costs.
Will I get a tax write-off for paying for the shipment of my specimen(s)?
By donating your specimens and shipping them to the institute, PHLBI will supply you with an acknowledgement of your donation.
Can the researchers remove me from this study?
The researchers may end your participation in this study at any time for a number of reasons, such as if your safety and welfare are at risk, if you do not follow instructions, or if you miss scheduled visits.
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.
Who can I contact if I have questions about this study?
The Research Team:
You may contact Lien Hua-Feng, RN, MSN, NP-C at 310-474-8223 with any questions or concerns about the research or your participation in this study. You can also call (310) 478-4678 to reach Dr. Raymond Wong during regular business hours Monday through Friday from 9:00 – 5:00 pm.
What are the next steps if I choose to participate in this research study?
- Clinical data and specimen(s) can be collected at PHLBI or may be collected by your own physician and mailed to us.
- Read and fill out the Confidential PHLBI tissue bank Questionnaire .
- If you wish to donate at PHLBI please schedule a time to come in by phoning us at (310)-478-4678.
- The best time to come in are Tuesdays-Fridays from 11 AM- 7 pm.