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Why you should gift your brain to Research. What is involved? Who does it benefit?. Organ donation for Research versus Transplant. Separate and specific consent. Not linked with organ donor register due to Government regulations. Can do both.
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Why you should gift your brain to Research.What is involved?Who does it benefit?
Organ donation forResearch versus Transplant • Separate and specific consent. • Not linked with organ donor register • due to Government regulations. • Can do both. • Transplant donation will precede research donation.
How to donate your brain • Discuss your wishes. • Obtain information package. • Next of Kin and yourself sign the consent. • Arrange for the signed form to be returned. • Tell your family doctor. • Enrolment is complete.
Then what will happen? • Details added to a secure database. • Baseline medical details. • surveys to yourself and your doctor(s). • Regular updates. • surveys every 1-2 years.
When should I enrol? • The earlier the better!! • Many medical and neurological conditions affect the brain (pathological and/or chemical changes). • Prospective better than retrospective (scientifically). • Improves research outcomes. • Can factor in duration, severity etc. • In case the unexpected happens!! • Consent can be withdrawn at any time.
Why should I enrol? (Research point of view) • Large number of cases necessary due to: • Different lifestyle, diet, alcohol consumption etc. • Varying disease complications & presentations. • Medications taken. • Variety improves research outcomes. • Can factor in age, sex, illness duration and severity etc. • Similarity improves research outcomes. • Don’t have to factor in age, sex, illness etc.
Why should I enrol? (Donor point of view) • Will it help me? • No! But …….. • Allows something good to come from your illness and/or death. • A contribution to our understanding of the brain. • May help lead to discoveries to benefit humanity in the future. • Family given definitive diagnosis (if appropriate).
At the time of death • “Cause of Death” Certificate signed by doctor. • Research team contacted. • Brain removed. • Within 36 hours. • Limited to brain only (+ spinal cord in some instances). • No disfigurement. • No delay to funeral. • No additional cost to family. • Neuropathological examination and diagnosis. • Tissue retained for research use.
Neuropathological examination Macroscopic examination Microscopic examination Diagnosis Research studies
PD AD Research Studies • Does not preclude participation in other studies. • Tissues studied by researchers worldwide. • Studies into brain diseases as well as normal aging. • Genetics. • Proteomics. • Pathology. • Many others.
Who to contact? • Study coordinators: if participating in: • Memory and Aging Study, Stroke Study, PRIME Study or Centenarian Study. OR • Website: www.braindonors.org • Telephone or mail: • Brain Donor Program, POWMRI, Barker Street, Randwick, NSW, 2031. Ph (02) 9399 1000. • Brain Donor Program, Pathology Dept, Sydney University, NSW, 2006. Ph (02) 9351 2410
Questions? Thank you