Tissue Procurement Program (TPP)

Transcription

1 Tissue Procurement Program (TPP) Information for patients and families UHN Leave a legacy by helping others with cancer, now and into the future. Please visit the UHN Patient Education website for more health information: University Health Network. All rights reserved. This information is to be used for informational purposes only and is not intended as a substitute for professional medical advice, diagnosis or treatment. Please consult your health care provider for advice about a specific medical condition. A single copy of these materials may be reprinted for non-commercial personal use only. Author: Tissue Procurement Program Revised: 03/2016 Form: D-5208

2 What is the Tissue Procurement Program? The Tissue Procurement Program (TPP) allows you to take part in important clinical research to help control or cure diseases like cancer. Taking part in this kind of program helps researchers learn more about: how tumours respond to certain medicines and other treatment why different patients with the same cancer may respond differently to the same treatments how to improve surgeries and medicines to treat cancer how to develop treatments with fewer side-effects People all around the world take part in clinical research programs. They do it because they want to help researchers develop a better understanding of diseases. Clinical research programs like TPP lead to improvements that help thousands of people every year. Taking part in TPP means you can help people with cancer live longer and have a better quality of life. Who can take part in the program? You can take part in TPP if you have an advanced cancer and have been treated at University Health Network (UHN) at some time during your medical care. Your health care team can help you find out if the program is suitable for you. 2

3 How do I find out more about TPP? If you want more information, talk to your doctor, someone on your health care team, or someone on the TPP study team. They can answer any questions you have and give you more details. It s always a good idea to have a friend or relative with you when you ask about the program. Write down the answers to your questions. If you re not sure you understood the information completely, try repeating it back to your doctor, nurse or member of the research team. You might want to get a second opinion about the program from a health care professional who is not part of the research team. Like all clinical research programs, TPP must follow certain rules and has benefits and risks. It s important that you and/or your loved one get all the information you can before agreeing to take part. If my doctor asked me to take part in TPP, does it mean my cancer is getting worse? No. Clinical research programs like TPP are for all patients with advanced cancers. The health care teams at UHN talk to as many patients as possible about TPP. Everyone s cancer journey is different. Your health care team s first priority is to make sure you receive the treatment you need to fight your disease. We encourage you to ask your health care team any questions you may have. Do I have to take part in TPP? No. You can agree to take part in the program, or you can choose not take part at all. Even if you agree, you can change your mind later. Your choice will not affect the care you receive in any way. You will not lose benefits you are entitled to. You can also choose not to answer any questions you don t want to answer. 3

4 What do my family and I have to do if I agree to take part? If you agree to take part, you need to sign consent forms. Signing these forms means that you read and discussed all the information about the program and agree to take part. We also need your family and/or friends cooperation. After you sign your consent forms, we ask you to give about 20 millilitres (4 teaspoons) of your blood. This blood sample is important for future medical research. We would take this blood sample while you are already in the hospital for your medical care. The side effects of giving this blood sample are bruising, bleeding or infection in the area we took the sample. If you decide you don't want to give a blood sample, please speak to the TPP coordinator or TPP clinical nurse. Consent forms The consent forms list all the important information about TPP. This includes information about tests, procedures, benefits and risks. If you agree to take part in TPP, you are asked to sign 2 forms: UHN Autopsy Consent and UHN Biobank Consent. You may also be asked to sign a study-specific consent form for sub-studies. Signing these forms means you: understand the program is for research only. No results from the research will be available to your family. have been told what TPP is about and what taking part in it involves have all the information you need to decide whether or not to take part in the program understand your rights and responsibilities You could be asked to sign a new consent form if any changes are made in the program. Even if you have already given consent to take part in TPP, you may leave the program at any time and don t have to give a reason. 4

5 Who is part of the TPP team? The TPP team includes doctors, nurses, social workers and other health care professionals. Your oncologist (cancer doctor) will either be involved in the research program or will know whether you are taking part in the program. They will continue to look after your cancer treatment and care. A clinical research coordinator will meet with you if you want to get more information about the program. If you decide to take part in TPP, the clinical research coordinator will support you and answer any questions you may have. The coordinator works with your health care team to make sure the program runs smoothly. When are the tissues removed? For the TPP program, we remove any tissues for clinical research during a procedure called an autopsy. During an autopsy, a doctor examines the inside and outside of a body after death. It s a common procedure that is usually done to find out the cause of death. In this case, we take samples of any tumour tissues or other tissues that would be important to study during cancer research. 5

6 What happens? As soon as you or your loved one passes away and the death certificate is complete (or near complete) medical staff contacts the TPP coordinator. The coordinator makes all the necessary plans to move your body to Toronto General Hospital (TGH), where the autopsy takes place. For the TPP program, time is important. We try to do the autopsy within 6 hours of death to keep the quality of the tissue samples high. When the body arrives at TGH, a doctor does the autopsy. The doctor only makes cuts in the areas on the body where the tumours are, so they can remove samples. They may also remove samples of the tissue around the tumours. The body is treated very respectfully during the autopsy. An open casket viewing is still possible at funeral homes. Your tissue and blood samples go to the UHN Biospecimen Sciences Program. All tissues are treated with respect and kept private by using numbers to identify them instead of names. The UHN Biospecimen Sciences Program follows all laws and standards for keeping, using, and disposing of tissues. After the autopsy is complete, the funeral home you or your family chooses picks up the body by calling TGH security at Most funeral homes are aware of the procedure. UHN or TPP can t make funeral arrangements or move the body after the autopsy. 6

7 What about weekends and nights or when the death certificate is delayed? We don t have a weekend service, but this may change in the future. If the death certificate is delayed, we will still try to do an autopsy as soon as possible. We are not able to arrange an autopsy for a patient in a palliative care centre or hospice outside of the Greater Toronto Area, since it s not possible to transfer the body to TGH in time. Will my family find out the results from any study? Results from studies using TPP biospecimen samples may be reported in scientific journals or at conferences. Tissue research often takes a long time and uses tissue samples from many people. The results may not be ready for many years and your family won t learn any specific results about your tissues. The tissue samples are not labeled with any names, so they can't be identified. Who can I contact if I have any questions about TPP? If you have any questions about TPP or would like more information, please contact: Brian Li, BHSc, MSc Clinical Research Coordinator for TPP Phone: Pager: Mobile: brian.li2@uhn.ca Dr. Neesha Dhani, MD, FRCPC Principal Investigator for TPP Medical Oncologist at the Princess Margaret Cancer Centre Mobile: , extension neesha.dhani@uhn.ca 7

8 Dr. Runjan Chetty, DPhil, MB, BCh, FRCPC Interim Medical Director of the Laboratory Medicine Program at the Princess Margaret Cancer Centre Phone: Dr. Jagdish Butany, MBBS, MS, FRCPC Directory of Autopsy Services Phone: Note: Don't use to communicate private information because it may not be safe. 8