Brain and Tissue Donation Program

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 Center Clinical Core at IU 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.

Specifically, information obtained from examinations of donated tissue helps Indiana Alzheimer’s Disease Center researchers identify genetic causes of Alzheimer’s disease and environmental risk factors of Alzheimer’s disease, and advances development of technology in the early diagnosis and treatment of Alzheimer’s disease. The data is used in studies conducted at IU School of Medicine, and the information is entered into a national databank, where it can be accessed by researchers around the world. The identity of Indiana Alzheimer’s Disease Center subjects is kept strictly confidential.

Donation FAQ

Frequently asked questions about the brain and tissue donation program at IU School of Medicine are answered here.

A typical annual examination at the Indiana Alzheimer Disease Center 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. With the physical exam includes blood tests and lumbar punctures.

As a participant in the Indiana Alzheimer’s Disease Center Clinical Core, there is no cost associated with brain donation. The Indiana Alzheimer’s Disease Center pays for transportation and the neuropathological studies that are performed.

The Indiana Alzheimer’s Disease Center is interested in studying how the brain ages. It is scientifically important to study unaffected individuals in addition to affected individuals. Therefore, the Indiana Alzheimer’s Disease Center Brain Donation Program is open to all IADC participants regardless of whether or not they have dementia or other diseases of the brain.

If it is reasonable to transport the body to Indianapolis, an autopsy will take place at IU School of Medicine 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 Indiana Alzheimer’s Disease Center.

Donated brains are studied and banked with the Indiana Alzheimer’s Disease Center Neuropathology Core. The tissue is stored long-term and may be used for future studies as new discoveries are made.

No. When arranged prior to death, brain donation generally does not delay funeral arrangements.

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.

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:

  1. The spouse.
  2. If there is no spouse, then any adult child.
  3. If there is no spouse or adult child, then a parent.
  4. If there is no spouse, adult child or parent, then any relative who lives in the county.
  5. If there is no spouse, adult child, parent or relative who lives in the same county, then any relative.
  6. If none of the above, then any other person assuming custody of and financial responsibility for the burial of the body.

It may be possible. The autopsy coordinator can assist in this determination.

Yes. The Indiana Alzheimer’s Disease Center Brain Donation Program will be discussed with you at each study visit. The decision to donate remains with you and your family.

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. For more information regarding eligibility for enrollment, contact us.

General Research FAQ

A typical annual examination at the Indiana Alzheimer Disease Center 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. With the physical exam includes blood tests and lumbar punctures.

Information obtained from examinations help Indiana Alzheimer’s Disease Center researchers to identify genetic causes of Alzheimer’s disease, identify environmental risk factors of Alzheimer’s disease, and develop technology in the early diagnosis and treatment of Alzheimer’s disease. The data obtained is used in studies conducted at IU School of Medicine, and the information is entered into a national databank, where it can be accessed by researchers around the world. The identity of Indiana Alzheimer’s Disease Center subjects is kept strictly confidential.