Tissue Donation and the Penn Brain Bank
How Big a Problem are Brain Diseases and Injuries?
Despite enormous advances in brain research, brain and central nervous system disorders remain the nation's leading cause of disability, and account for more hospitalizations and prolonged care than almost all other diseases combined.
Brain Diseases In the United States: Total Cases and Costs Per Year
|Alzheimer's Disease||4,000,000 cases||$60 billion|
|Blindness||13,000,000 cases||$38 billion|
|Brain injury||2,000,000 cases||$48 billion|
|Deafness||28,000,000 cases||$56 billion|
|Depression||17,500,000 cases||$30 billion|
|Devel diseases||15,000,000 cases||$30 billion|
|Epilepsy||2,500,000 cases||$3 billion|
|Huntington's Disease||25,000 cases||$0.25 billion|
|Multiple Sclerosis||300,000 cases||$5 billion|
|Pain||90,000,000 cases||$100 billion|
|Parkinson's Disease||500,000 cases||$6 billion|
|Schizophrenia||2,000,000 cases||$30 billion|
|Spinal cord||250,000 cases||$10 billion|
|Stroke||3,000,000 cases||$25 billion|
This totals around $600 billion per year. As a comparison, about 61 million Americans (almost one-fourth of the population) have some form of cardiovascular disease. In 2003, the cost of heart disease and stroke is projected to be $351 billion: $209 billion for health care expenditures and $142 billion for lost productivity from death and disability. The costs for cancer averaged $150 billion in 2002.
Critical Contributions Needed for Research
At Penn, the Penn Alzheimer’s Disease Center (ADC) and the Center for Neurodegenerative Disease Research (CNDR) maintain a brain and tissue bank, funded by the National Institutes of Health (NIH), that contains human brain samples obtained from patients with Alzheimer’s disease (AD), Parkinson’s disease (PD), and other related neurodegenerative dementias and movement disorders. The “Penn Brain Bank” Manager is Terry Schuck.
The “Penn Brain Bank” serves as a resource for scientists and researchers, providing access to tissue samples that are invaluable in research. Priority is given to researchers working on NIH-funded multi-component projects being conducted here at Penn or in collaboration with researchers here at Penn. Wherever possible, requests from outside researchers and scientists are honored.
Currently, the “Penn Brain Bank” accepts donations only from those seeing a Penn physician or collaborator. Patients are enrolled as donors through their Penn physicians.
How Can I Make a Donation?
The Center for Neurodegenerative Disease Research (CNDR) encourages all families of patients affected by an aging related neurodegenerative disorder - be it Alzheimer’s or Parkinson’s disease, amyotrophic lateral sclerosis or frontetemporal disease or other related disorders - to consider donation of nervous system tissues (i..e brain and spinal cord) from decedents for autopsy establishment of the exact cause of the patient’s cognitive or motor impairments.
However, we wish all of our families and their loved ones to know that since all autopsy programs in CNDR are supported by grants/contracts from the National Institutes of Health (NIH), the largest supporter of biomedical research and a branch of the Federal Government, we must adhere to the protocols in these grants/contracts which specify that resources committed to our autopsy programs be dedicated to decedents who have been enrolled as patients or controls in our research programs.
Hence we can only accept brain/spinal cord donations from the families of deceased individuals who are in our NIH supported autopsy programs, that is to say participating with one of the following organizations at Penn: Penn Alzheimer's Disease Center, Penn Memory Center, Parkinson's Disease and Movement Disorders Center at Pennsylvania Hospital, Penn Udall Center for Parkinson's Research, Cognitive Neurology Clinic, and the Brain/Spinal Cord Donation Program at the ALS Center at Pennsylvania Hospital. You can find out how to participate in research (and thus the brain and tissue donation program) by clicking on each of the organizations listed previously in blue.
For more information about tissue donation to Penn's brain and tissue bank, contact:
Center for Neurodegenerative Disease Research
Where Else Can I Make a Donation?
With over 40 NIH-supported brain banks across the U.S., the “Penn Brain Bank” is not alone in providing researchers with access to specimens for further analysis and study or accepting donations. For a state by state listing of brain banks, visit www.ninds.nih.gov/funding/research/parkinsonsweb/brainbanks.htm.
Alternative regional/local sources for brain donation:
- Harvard Brain Bank at 1-800-272-4622
- Thomas Jefferson University, Jefferson Medical College, Dr. Larry Kenyon at 215-955-2071
- Drexel University College of Medicine, Dr. Carol Lippa at 215-762-4761