The understanding of the clinical, pathologic and molecular aspects of Alzheimer’s disease and other dementias has advanced rapidly. Brain tissue of demented individuals must be studied for diagnostic and research purposes using a multidisciplinary approach. The Indiana Alzheimer's Disease Research Center Clinical Core at Indiana University School of Medicine has collected a wealth of information through clinical assessments, cognitive testing, imaging, and the collection of biomarkers. Linking this clinical data with autopsy findings maximizes the impact of information collected and is invaluable in supporting future research.
Brain and Tissue Donation Program
Prepare for your upcoming visit
Participate in a Study
Adults 65 and older with mild to moderate memory difficulties are needed for brain-imaging studies of memory at IU School of Medicine.
Transforming Alzheimer's researchInformation obtained from examinations of donated tissue helps the researchers at the Indiana Alzheimer's Disease Research Center identify genetic causes and environmental risk factors of Alzheimer’s disease. Additionally, this valuable information helps the Center advance the development of technology in the early diagnosis and treatment of Alzheimer’s disease. The data gathered through this program is used in studies conducted at IU School of Medicine and entered into a national databank, where it can be accessed by researchers around the world. This work not only helps the world's understanding of this challenging disease, but it also ensures the disease will eventually effectively be treated and prevented.
Will my or my loved one's identity be confidential?Yes. The identity of all subjects who take part in the Brain and Tissue Donation Program at the IADRC is kept strictly confidential.
What is involved in a typical examination?
A typical annual examination at the IADRC involves three separate components and lasts three to five hours.
- Neuropsychological Exam: This exam helps to characterize the memory and thinking abilities of the patient.
- Informant Interview: This exam is used to obtain information from a close family member or caregiver regarding the current physical, mental and behavioral health of the patient, as well as any changes they may have noticed. This portion is conducted simultaneously with the neuropsychological exam.
- Physical Exam: This exam is utilized to assess and characterize the physical, mental and behavioral status of the patient. The physical exam includes blood tests and lumbar punctures.
Is there a cost to participate in the IADC Brain Donation Program?As a participant in the IADRC Clinical Core, there is no cost associated with brain donation. The Indiana Alzheimer's Disease Research Center pays for transportation and the neuropathological studies that are performed.
If I don't have Alzheimer's disease or another neurodegenerative disease?
The IADRC is interested in studying how the brain ages. It is scientifically important to study unaffected individuals in addition to affected individuals. Therefore, the IADRC Brain and Tissue Donation Program is open to all participants regardless of whether or not they have dementia or other diseases of the brain.
Where will the autopsy be done?
If it is reasonable to transport the body to Indianapolis, an autopsy will take place at IU School of Medicine and/or IU Health in Indianapolis. If death occurs a significant distance from Indianapolis, it may be necessary to work with a local pathology center and have the tissue shipped to Indianapolis. The autopsy coordinator will work with you and your family to make these arrangements. In either case, the brain tissue will be studied by the IADRC.
What happens to the brain?Donated brains are studied and banked with the IADRC Neuropathology Core. The tissue is stored long-term and may be used for future studies as new discoveries are made.
Will funeral arrangements be delayed if I donate my brain for medical research?
No. When arranged prior to death, brain donation generally does not delay funeral arrangements.
Can there be an open casket at the funeral if I choose to be a brain donor?
Yes. The procedure is done in such a way that there are no apparent marks to the body as a result of the brain donation.
What does Indiana law say about autopsy?
In Indiana, consent for autopsy must be provided after death by the next of kin. The next of kin is legally defined as the following:
- The spouse.
- If there is no spouse, then any adult child.
- If there is no spouse or adult child, then a parent.
- If there is no spouse, adult child or parent, then any relative who lives in the county.
- If there is no spouse, adult child, parent or relative who lives in the same county, then any relative.
- If none of the above, then any other person assuming custody of and financial responsibility for the burial of the body.
Can I still be an organ donor if I'm a brain donor?
It may be possible. The autopsy coordinator can assist in this determination.
Can I change my mind?
Yes. The IADRC Brain and Tissue Donation Program will be discussed with you at each study visit. The decision to donate remains with you and your family.
How do I enroll in the Indiana Alzheimer's Disease Research Center?
An initial screening questionnaire is necessary to determine eligibility. This includes a telephone or in-person interview and the review of previous medical records. Once a person is found to be eligible, an appointment can be scheduled to explain the study in detail through the informed consent process. Complete the self-referral form to learn about eligibility and more.