Patient and Family Information
Neurodegenerative diseases like Alzheimer dementia and Parkinson disease, are relatively common. They affect many Canadians and most of us know someone with one of these diseases. They are also difficult to treat. Although a great deal of research has been done on these diseases, which has identified some of the causes and some of the mechanisms that lead to nervous system degeneration, much remains to be done.
Unlike many human diseases, most of the neurodegenerative diseases that afflict people do not have good animal models for scientists to study. Many animal models have been developed that have similarities to human disease and in recent years, researchers have been able to "cure" mice of their human-like disease. However, these treatments have failed when applied to people. Research in these diseases still requires human tissues, to help understand the causes and mechanisms of these diseases, and to help improve animal models.
Through two private grants, the University of Calgary has established the Calgary Brain Bank (CBB) for normal tissues and neurodegenerative diseases. The purpose of the CBB is to provide scientists studying neurologic diseases like dementia with human brain tissue that has been examined by a pathologist.
Although funding sources, the University and its staff have built the structure for the brain bank, the Calgary Brain Bank fundamentally requires patients and families to participate and donate tissue for research. We ask that families and patients through their families be willing to provide tissue for research by requesting autopsies and providing consent to use the tissues for research.
To be useful for research, a scientist needs to know which disease or diseases affected the tissue they are using. To know this, a pathologist must examine the brain and determine the diseases and the extent to which they affected the tissues. This requires an autopsy, which allows a pathologist to both examine the tissues under a microscope and to set aside samples that might be useful for researchers.
For further information about the donation program, cognitive neuroscience, or movement disorders we have provided the following brochures: Cognitive Neuroscience Donation Program, Cognitive Neuroscience Brochure, Movement Disorders, Multiple Sclerosis Donation Program.
At this time, the Calgary Brain Bank can only accept patients who have been diagnosed with neurodegenerative diseases and have been followed in one of the specialty Calgary clinics (cognitive neuroscience, movement disorders, ALS, or multiple sclerosis) or has been followed by a neurologist or similar physician with experience in degenerative diseases.
Questions and Answers
Below are a series of questions and answers that we hope might answer some of the questions you have about the Calgary Brain Bank.
Q: What is an autopsy?
A: An autopsy is a medical procedure performed by a pathologist after a patient has died. The pathologist removes organs from the patient and then examines samples from those tissues under a microscope.
Q: What is the purpose of an autopsy?
A: An autopsy has several different purposes. It can be used to provide pathological diagnoses for a patient's different diseases. For example, while a clinician might suspect that a patient has Alzheimer disease, a final diagnosis requires examination of brain tissue under a microscope to look for this disease's characteristic "plaques and tangles". An autopsy is also an instrument for educating physicians, residents, medical students, and families about a patient's diseases. In some cases, autopsies have important medicolegal aspects. Finally, autopsies can provide scientists with precious materials for research.
Q: What's the difference between a brain donation and an autopsy?
A: An autopsy is a specific medical procedure in which organs are examined by a pathologist, who then uses the results to diagnose diseases that afflicted the patient and determine the cause of a patient's death. A brain donation is usually gifted to a medical school for anatomic dissection or given to a specific researcher. However, any donation is not examined by a neuropathologist and so the patient's diseases cannot be pathologically confirmed or quantified. Unlike a donation for research, a pathologist who performs the autopsy issues a report that discusses patient’s diseases and causes of death. Another difference is that an autopsy requires permission by the patient’s family after the patient has passed away; in contrast, a patient can request their tissues be donated for research before death, which does not require a family's permission.
Q: Why should we donate to the brain bank instead of just getting an autopsy?
A: By getting an autopsy, a family will be able to get answers to some of their questions, such as what were their loved one's diseases, how extensive were their diseases, and what caused their death. For families who agree to donate to the Calgary Brain Bank, they will have the benefits of both the autopsy and knowing that tissues retained for research might lead to a better understanding of the disease that affected the patient. The autopsy report can also be used by clinical researchers to correlate the pathological information with clinical disease.
Q: What is a brain bank?
A: A brain bank is a repository of donated autopsy brain and spinal cord tissue that has been pathologically characterized and is available for researchers studying brain diseases. The Calgary Brain Bank makes it possible for scientists investigating neurodegenerative disorders like Alzheimer disease and multiple sclerosis to access human brain tissue.
Q: Why do researchers need human brain tissue? Why can't they just use animal models of these diseases.
A: Families who request a brain bank autopsy help researchers who are studying neurodegenerative disorders like Alzheimer dementia or Parkinson disease. Animal models of human neurodegenerative diseases do not fully replicate the human disease, so human brain tissue is still important for our understanding of these diseases and for potentially finding a cure or treatment. Thus, many donors and their families see brain donation as an opportunity to contribute to the understanding of these disorders and to help improve health for future patients.
Q: Who sponsors the brain bank?
A: The Calgary Brain Bank is sponsored by the Hotchkiss Brain Institute at the University of Calgary. It has been funded by two generous grants from Marion Lamb and by a professorship in dementia research established by Donald Burns and Louise Berlin.
Q: Who runs the brain bank?
A: The Calgary Brain Bank is currently run by Drs. Eric E. Smith, who is a stroke and dementia neurologist, and Jeffrey T. Joseph, who is a neuropathologist.
Q: Can we get an autopsy limited to just the brain? What types of autopsy are available?
A: There are two types of autopsies available: complete autopsy and partial autopsy. A complete autopsy consists of an examination of the entire body, including all major organs, such as the heart, lungs, and brain. A partial autopsy consists of an examination of a specific part of the body. A family that desires to donate a loved one’s brain to the brain bank but does not wish to request a complete autopsy may ask for a “brain only” or “brain and spinal cord only” autopsy.
Q: What types of diseases does the Calgary Brain Bank process?
A: We accept brain donations from patients who have been diagnosed with a neurodegenerative disease and have been followed in one of the Calgary specialty clinics (cognitive neuroscience, movement disorders, ALS, or multiple sclerosis) or has been followed by a Calgary neurologist or geriatrician. Some of the disease tissues banked include Alzheimer disease (AD), frontal temporal dementia (FTD), vascular dementia, Parkinson disease (PD), progressive supranuclear palsy (PSP), amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS).
Q: If my loved one had a brain infectious disease, can I still donate the brain?
A: You can still request an autopsy and ask that tissue be used for research; however, the Calgary Brain Bank does not store tissues from such diseases. The autopsy would be done by staff neuropathologists at Alberta Precision Laboratories (APL). Patient's with CJD (Creutzfeldt-Jakob Disease) can donate tissues through the CJD Surveillance System; their autopsies will still be done by APL neuropathologists.
Q: Will the brain donation affect funeral arrangements?
A: No. The procedure does not interfere with the normal activities associated with a funeral. It does not affect the ability to have an open casket funeral.
Q: Are we required to pay anything for donating my loved one’s brain to the CBB?
A: No. The family incurs no cost for the autopsy or banking procedures. The brain bank has limited funds to transport patients from Calgary facilities outside of Foothills Medical Centre (FMC). This transportation is arranged by Vital Statistics at FMC (see below). Please note that all other aspects of funeral arrangements, including transportation from FMC, remain the responsibility of the family.
Q: What happens to the brain tissue after donation?
A: Parts of the brain are prepared for diagnosis and parts are prepared for researchers. Most commonly, select samples are frozen for research, while the remainder is fixed in formalin and is used both for research and for neuropathological examination to arrive at an autopsy diagnosis.
Q: How long is tissue kept in the brain bank?
A: Tissue is kept indefinitely until a researcher requests it for their investigations.
Q: I don’t want an autopsy to be performed; can I still request that a brain be donated?
A: No, a formal autopsy is required. To be useful for research, the tissue needs to be accurately characterized. In order to be sure of the diagnosis and to quantify specific changes, the neuropathologist needs to examine the tissues. The autopsy report provides extensive information about the tissues that is critical for scientists studying human diseases.
Q: When should plans be made to ensure brain tissue donation occurs after death?
A: Let your loved one’s health care provider know of your intentions as soon as possible and provide them with the Calgary Brain Bank Autopsy Instructions Handout.
Q: What if we decide to change our minds and withdraw after giving consent?
A: If you withdraw consent for the autopsy before it happens, no autopsy will be performed. If you withdraw consent for research purposes but still want the autopsy, the Calgary Brain Bank will not process any tissue. If you withdraw consent for research purposes after the autopsy is performed, the stored tissue will be appropriately disposed and all records on the patient will be deleted or destroyed. However, once tissue has been provided to a researcher, it cannot be withdrawn, since it would now be anonymous.
Q: Is our privacy secure? Is the donation anonymous?
A: The brain bank neuropathologist will perform the autopsy as part of clinical care and thus will have access to the clinical information. The autopsy report will be available for the family to review with their clinicians. Once the autopsy report is complete, the identifying information in the brain bank is removed. Only de-identified or anonymous data about the tissues is provided to researchers.
Q: What do I do if I want to donate my brain?
A: By Alberta law, you cannot consent to your own autopsy; consent can only be given by your next of kin. Alberta law protects family members who might not want this information. Thus, it is important that you make your wishes known to your family. Potential brain donors should also notify an appropriate health care professional (e.g. nursing home staff or their private physicians) of their wishes, so that they can make sure the process happens as smoothly as possible.
Q: My family member has a progressive neurodegenerative disease. How can I request an autopsy after my loved one passes away?
A: The best way is to contact Vital Statistics (or Admitting outside of normal working hours) at Foothills Medical Centre (FMC) and let them know that you would like to request an autopsy for donation of tissue to the Calgary Brain Bank. Their phone number is: 403-944-1689. Vital Statistics/Admitting will ask you some questions, including who is the patient's next-of-kin and their contact number. They will also obtain necessary information such as the patient's name, current location, and medical record number. Vital Statistics/Admitting will then arrange for transportation of your loved one from where they passed away to FMC
Q: I have other questions. How can I get further information?
A: Contact the Calgary Brain Bank by email: ucbb@ucalgary.ca
If the consent has not already been completed, someone from the Calgary Brain Bank will contact the patient's next-of-kin that day or the following morning and obtain the required consent for autopsy. A consent obtained over the phone requires two witnesses, in addition to the physician who calls and speaks with the next-of-kin.
You can also request an autopsy by contacting the patient's private physician or if the patient was in a chronic care facility, by contacting the professional staff at the facility. You can provide them with this website. Also read the Brain Donation Information for Next of Kin.
Certain tasks you can do proactively. You will be required to arrange transportation with funeral homes to pick up the deceased from Foothills Medical Centre after the autopsy. You can also talk with family members about brain donation, and discuss donation with your physicians and caregivers. Although you can complete part of the Autopsy Permission Form, this cannot be signed before a patient dies; it must be signed after death.