Participants who complete the PROGENI or PROGENI Cares study may choose to participate in a voluntary autopsy program. Examination of brain tissue after death is currently the only definitive way to confirm the diagnosis of Parkinson’s disease. The information obtained through autopsy will provide family members with invaluable family medical history information. Autopsy is also important for participants who do not have PD, as there is much yet to be learned about healthy aging in the brain.

Often families are reluctant to discuss autopsy. However, the time to make decisions regarding autopsy is before the need arises. The PROGENI and PROGENI Cares staff encourage families to plan for autopsy well ahead of time. Autopsy will not delay or complicate plans for a funeral, cremation, or burial. Neither will it interfere with a desire for an open casket.

Because of the time constraints, it is suggested that all persons involved with the care of your family member be made aware of the desire to have an autopsy performed. These individuals need to know who to contact at the time of death so that the appropriate steps are taken to ensure rapid removal of brain tissue. At the time of death, authorization to perform the autopsy must be granted by the next of kin or legal guardian. This individual must sign an authorization form. If your family member is in a nursing home or other institution, this form will need to be on file with the institution.

Tissue for autopsy needs to be removed within 6-12 hours following death. A local pathologist can usually remove the tissue. If the staff at the local site do not have experience in diagnosis of Parkinson’s disease, the tissue can be transported to another facility for diagnosis. Researchers involved in the PROGENI study will work with you to help locate a facility to receive the tissue and make the diagnosis. Family can then expect to be provided information regarding the diagnosis six to twelve months after the death.

Download a brochure with more information about autopsy planning.