General Questions
- What is “tissue” and what tissues are examined?
Tissues are the cells in our body that together form our organs. These organs include, but are not limited to breast, bone, brain, liver, lung, spinal cord, thyroid, heart, spleen, stomach, gallbladder, intestine, pancreas, kidney, uterus, skin, muscle, cartilage, esophagus, hair, blood, and urine.
- What is a tissue donation program in the context of cancer research?
A tissue donation program, sometimes referred to as a rapid autopsy program, is the collection of tissue specimens from both living and deceased cancer patients for research purposes.
- What is the purpose of a tissue donation program?
The goal of a tissue donation program is to research better treatments for patients with cancer with the ultimate goal of improving survival outcomes. Cancers often become resistant to the drugs used to treat them and then continue to grow. Often as the cancer progresses, there can also be genetic changes in certain organs. Through a tissue donation program, researchers are able to access unique tissue to study why cancers progress and result in mortality. Obtaining this information helps to further cancer research.
- What can be gained scientifically by donating tissue?
By donating your tissue to science, cancer researchers can better understand the evolution of the disease as it progresses from early disease to metastatic disease, and ultimately can identify better treatments and methods to prevent and treat cancer.
The Lee/Oesterreich lab has a very concrete example whereby a unique change in the structure of the estrogen receptor gene (called a fusion) was identified in a tissue sample from a patient who had consented to the Hope for OTHERS program. This unique change led to the discovery that estrogen receptor fusions cause resistance to hormone therapy. There exists now a large program studying these receptor fusions in treatment resistance and breast cancer metastasis.
- Can I change my mind? Can my family decline to proceed with tissue donation?
Yes – you can change your mind after consenting to the Hope for OTHERS program. Yes – your family can also decline to follow through with your wishes. Open communication and discussion between the Hope for OTHERS clinical coordinator and your family and loved ones is of utmost importance. The coordinator will attempt to answer everyone’s questions and address their concerns.
- What if I have additional questions, want more information, or want to schedule an appointment to sign my consent?
Please call the Hope for OTHERS Clinical Coordinator, Lori Miller, at 412-439-1489. You may also send an email to HfO@pitt.edu, millerl15@upmc.edu, and/or lam267@pitt.edu.
Participation
- What if I am already designated as an organ donor (e.g., on my driver’s license)?
Unfortunately, people who have metastatic cancer can no longer donate their organs for transplant purposes. There is the possibility of cornea donation, but that would be dependent upon circumstances at death and could not be determined until then. Importantly however, patients living with metastatic cancer CAN donate their tissue and organs for cancer research through a tissue donation or rapid autopsy program such as Hope for OTHERS.
- How do I ensure that my tissue will go to the Hope for OTHERS program?
A patient will have very close interaction with the Hope for OTHERS clinical coordinator and will have made pre-arrangements for consent. At that time, information will be given for instructions upon death. If the instructions are followed, then the patient and family can be assured that the autopsy is being performed to benefit this specific program.
- Can a limited autopsy be requested?
Yes – a limited autopsy refers to the examination of only those organs specified on the autopsy consent. If interested in a limited autopsy, this can be discussed with the Hope for OTHERS clinical coordinator.
- How much of my tissue and/or organs will be obtained for research?
This depends upon how much cancer there is in the organ. If only a very small tumor is present, then only the tumor is taken. If the entire organ has cancer, then it will be removed for examination. State law requires any excess tissue to be placed back inside the body.
- Will you share my tissues with other programs?
The Hope for OTHERS program is very interested in collaborations with other cancer research teams in the U.S. and worldwide to exchange knowledge and learn from each other. With the patients’ consent, Hope for OTHERS will share tissue with other groups in the same way that tissue is shared with their program. On rare occasions, these teams are not cancer research groups. An example would be the University of Pittsburgh neurodegeneration team (Alzheimer’s Disease research).
- For patients that are near death, are there any special preparations needed to be performed by the family or medical facility?
No – there are not any special preparations. The family just needs to alert the clinical coordinator of the imminent passing of their family member, and the whole rapid autopsy team will be notified to be on call 24/7 (including the pathologists and lab researchers).
- What if I die from a non-cancer related problem such as an accident or COVID?
This is dependent upon immediate notification by family members to the Hope for OTHERS clinical coordinator and the availability of a team to be available to perform the rapid autopsy. This is different than a patient in hospice where death will probably take place in the near future and the clinical coordinator has been alerted in advance.
- How is my body returned?
Your body is returned intact, minus the tissues retrieved, to the funeral home. The family can then make final arrangements of their choosing which may include cremation. The autopsy is carefully performed to allow an open casket funeral as well, if desired.
- Are there any expenses for my family?
There are no expenses for the family.
Timing Logistics
- In the case of a patient who has consented to donate their body after death, how soon after death can the body be donated?
In the case of patients who have consented to donate their bodies to the program after death, a pathologist will perform what is called a “rapid autopsy.” The goal is to complete the autopsy and store the specimens within 4-6 hours after death. Unfortunately, the usefulness of the specimens starts decreasing after this time.
- When can I sign up for a tissue donation or rapid autopsy program?
A patient can sign up for a tissue donation or rapid autopsy program any time after receiving a diagnosis of cancer.
- How long are my tissue specimens kept?
Indefinitely. Patients still living have the right to rescind their consent at any time and the tissue specimens will be discarded. In the case of patients that have passed away, the patient’s family has the right to rescind their consent and the tissue specimens will be discarded.
- How long will my body be kept by the program?
The total time, including transport to the morgue, autopsy, and transport back to the funeral home is approximately 4-8 hours. The body can be held for a limited amount of additional time, based on the needs of the funeral home and/or the family.
Location Logistics
- Do I have to participate in a healthcare system located in the same state (or county) as the tissue donation or rapid autopsy program?
No – it does not matter in which healthcare system you are a patient, as long as the patient has provided a signed consent, and as long as the autopsy can begin 4-6 hours after death. Patients interested in participating in a tissue donation or rapid autopsy program should try to locate the closest participating facility to their residence.
- What if I live part-time in two different parts of the country. Can I register for a second tissue donation and/or rapid autopsy program near my other home?
Yes – the consents are not a binding contract. Tissue donation and rapid autopsy can be pursued in more than one location. As long as the patient has provided a signed consent and the autopsy can begin 4-6 hours after death, the family can decide which location to donate their family member’s body if their family member has provided consent to more than one tissue donation or rapid autopsy program.
- What if I die unexpectedly away from home or in another state?
The main issue is time, not the county or the state where the death occurs. This is not a problem if the autopsy can begin 4-6 hours after death.
What are the tissue donation and rapid autopsy programs that are currently accepting patients?
Click on the image below to view a map of all verified rapid autopsy and tissue donation programs within the United States and to learn more about each site specifically.
