Autopsy and the Genetics Initiative

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Autopsy and the Genetics Initiative
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Autopsy and NCRAD

• Since its inception, it has been the policy of
  NCRAD to cover all reasonable costs associated
  with the brain removal and autopsy of a study
  subject

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Autopsy and NCRAD

• Reasonable costs can include
• Transportation of the body
• Removal of the brain tissue
• Shipment of the brain to NCRAD or other location
  for examination
• Costs of neuropathology

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Autopsy and NCRAD

• The key to a successful autopsy is planning
• Families are typically approached to consider
  brain donation at several times, including
• during their active participation in the study
• during their annual follow-up
• Once interested, an autopsy plan is put into place

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Elements of an Autopsy Plan

• Health status of the subject
• Who will assist in making plan
• Funeral home arrangements
• Site for brain removal
• Means to transport body, if necessary
• Location for neuropathology

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Elements of the Autopsy Plan

• Finalize each element
• Put all plans into writing
• Send a copy of the autopsy plan with all details
  to all relevant individuals
• Family members - Nursing home
• Funeral home - Brain removal site
• Neuropathology site
• Reconfirm all elements of the plan on a yearly
  basis

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Autopsy Brochure

• New brochure is being developed which will
  provide information to families about autopsy
  planning
• Introduces the importance of autopsy
• Answers commonly asked questions and concerns
• Can be included with a cover letter as part of a
  mass mailing for annual update

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Annual Follow-Up and the Genetics Initiative
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NCRAD Annual Follow-Up

• NCRAD uses various tools to keep families
  interested in the project and thereby provide
  updated information annually
• Simple annual update form
• Cover letter describing study accomplishments
• Regular NCRAD Newsletters