Practical arrangements for brain tissue donation
Led by Dr. Benedikt Bader, the neuroacanthocytosis research team based
in Germany is ready to give practical guidance to your doctor if your
family should decide to donate brain tissue for research after death.
Tissue donation is the ultimate contribution NA patients can make to support research. The research team is very grateful for families' support. The NA disease group is extremely rare and patients’ tissue is vital to advance our understanding of the mechanisms leading to the disease.
Having a conversation together about willingness to make the tissue donation is the first step, and most patients are happy to agree. Read here how Ann Lippincott approached the subject of tissue donation with her daughter, Marika, in 2009.
If there is consent with the patient and family, the family should contact Dr. Bader (contact information) prior to death if this is feasible. Dr. Bader will be in direct contact with your doctor to discuss preparations, including the requirement for the autopsy to be done as quickly as possible and guidance on the procedure.
If an autopsy has already been performed, it is necessary to preserve at least paraffinated (?) tissue blocks of the following regions (as complete as possible);
- occipital (area 17),
- cingulate + corpus callosum,
- anterior hippocampus,
- posterior hippocampus,
- cerebellum (vermis region),
- cerebellum (dentate nucleus),
- mesencephalon inc. substantia nigra,
- medulla oblongata (inferior olive region)
Dr. Bader's team always seeks to arrange the transfer of tissue to Germany directly with the pathologist in charge.