Brain Donation Program Information

At The Parkinson's Institute, the primary mission of our researchers and clinicians is to unravel the cause of Parkinson’s disease and related movement disorders and to find a cure for these diseases.  In order to achieve these goals, the availability of brain tissue represents a most critical resource.  Only through neurochemical and neuropathological evaluation of these samples are we likely to fully understand the nature of the disease process. 

Our tissue bank, which includes brain tissue as well as blood and spinal fluid samples, is a precious and rather unique tool.  Unlike other brain banks, ours is focused on Parkinson’s disease and related-disorders research, and for this reason each brain is examined by an experienced neuropathologist to confirm the clinical diagnosis.  Brain donations from subjects who are not affected by Parkinson’s disease or other types of parkinsonism are also important, since these brains allow us to compare the changes that occur in Parkinson’s disease with non-parkinsonian tissues. 

We appreciate the generous spirit that prompted your inquiry about our brain donation program and pledge to treat the donated tissue with respect and in accordance with the highest standards of ethical medical research practices.  We strongly feel this is a critical program not only for researchers in the field of movement disorders, but perhaps more importantly, for patients and their families who will benefit from the outcome of this research.

Please call our brain donation desk at: (408) 542-5627 or e-mail us at: braindonation@thepi.org if you have any questions.

 

 


 


How do I Enroll?

There are four forms for you to complete in order to enroll in the brain donation program.  The Information Form begins the enrollment process and provides us with basic information to contact you, your family members, and your physicians as the need arises.  The Statement of Intentions Form formally gives us permission to use your brain tissue for medical research.  The Medical Record Release Form allows us to request your medical records from your physicians and hospital care givers.  Medical records are essential to enable us to correlate neuropathology with clinical history.  The Autopsy Permission Form must be signed by your next of kin to allow us to remove and examine the brain tissue after death. 

Click here to download the forms. You can also contact our brain donation desk at (408) 542-5627, and we will be happy to mail you a set of forms. 

If you are interested in participating in the program, please complete and return the forms to the following address:
 

               The Parkinson’s Institute
               Attn: Linda Rees
               675 Almanor Avenue
               Sunnyvale, CA 94085                             

What happens after enrollment?

If you do choose to enroll, we ask that you make your attending physician(s) aware of your intent to donate your brain for research purposes.  We will also send your physician(s) copies of the donation forms to be added to your medical records, and request he/she provide copies of relevant medical records. 
 
How is the Parkinson's Institute informed about a donor’s passing?

At the time of the donor’s death, the next of kin, another family member or the attending physician should notify us at the Parkinson’s Institute as soon as possible, day or night, by dialing the following number: (408) 656-1599
 
What is the procedure upon the death of the donor?

Staff from the Parkinson’s Institute will coordinate the procedure for brain autopsy. We travel to the location, whether it be a mortuary, nursing home or hospital, remove the brain and transport it to our facility, within 24 hours of death.  Removal must occur before the body has undergone the embalming process.  If a patient dies in the hospital, hospital personnel may perform the brain removal if requested by the patient’s family or the attending physician. 

Following the autopsy, funeral or cremation arrangements can proceed as planned.

Will my family get any reports?

Each brain is examined by an experienced neuropathologist to confirm the clinical diagnosis. Neuropathology results typically take several months to obtain.  We will contact your family to personally discuss the results with them, should they desire.  Most families find this a very positive experience that helps to bring closure.

Are there any costs involved?

Unfortunately, due to very limited funding we are currently not able to cover all costs, and donors who are not patients of the Parkinson’s Institute will be responsible for brain autopsy fees and associated costs charged by the hospital, mortuary or funeral home. The neuropathological analysis and detailed report are complimentary.

675 Almanor Avenue | Sunnyvale, CA 94085
408.734.2800 main | 408.734.8455 fax (Main) | 408.734.9208 fax (Clinic Secure)