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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 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.

Specifically, information obtained from examinations of donated tissue helps Indiana Alzheimer's Disease Research 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 Research Center subjects is kept strictly confidential.

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.

Join a Clinical Trial

Donation FAQ

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

  • What is involved in a typical examination?

    A typical annual examination at the Indiana Alzheimer's Disease Research 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.
  • Is there a cost to participate in the IADC Brain Donation Program?

    As a participant in the Indiana Alzheimer's Disease Research Center 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 Indiana Alzheimer's Disease Research 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 Research Center Brain 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 Indiana Alzheimer's Disease Research Center.

  • What happens to the brain?

    Donated brains are studied and banked with the Indiana Alzheimer's Disease Research Center 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:

    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.
  • 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 Indiana Alzheimer's Disease Research Center Brain 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 Disease 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.

General Research FAQ

  • What is involved in a typical examination?

     typical annual examination at the Indiana Alzheimer's Disease Research 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.
  • How is the information obtained from examinations used?
    Information obtained from examinations help Indiana Alzheimer’s Disease Research 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 Research Center subjects is kept strictly confidential.