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PARTNERS IN RESEARCH: CNDR || IOA || UDALL || Penn ADC
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Tissue Donation and the Penn Brain Bank

Talking about brain donation, Suzanne Roberts interviews John TrojanowskiA critical part of neurodegenerative disease research - like that done for Alzheimer’s or Parkinson’s and other diseases - is obtaining viable tissue and samples from various regions of the human brain to study. Examining donated post-mortem brain tissue has provided a wealth of understanding about how the brain functions and how neurodegenerative diseases progress.

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

Addiction
30,000,000 cases
$160 billion
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:

Kevin Davies
Administrative Coordinator
Center for Neurodegenerative Disease Research
Phone: 215-662-4474
daviesk@mail.med.upenn.edu

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: