Ataxia Tissue Donation
Donating tissue for medical research is an important and deeply personal decision. Proper planning can help ensure that wishes are accounted for and honored at the time of your or a loved one’s passing. The following is a brief description of the process of donating tissue for medical research through the National Ataxia Foundation under the care and guidance of Dr. Arnulf Koeppen. For more details or to make arrangements for tissue donation please follow-up with Dr. Koeppen directly at his contact information listed below.
Q. Why is tissue donation important?
The examination of diseased tissues by a trained
pathologist remains the gold standard for diagnosis. An
explanation of ataxia arises from such an examination,
and key questions about the severity of ataxia can be
answered. Tissues of persons with ataxia are needed to
study the fine details of how the brain and spinal cord
are injured by the disease. In Friedreich’s ataxia,
donation may include tissues from the heart and
pancreas as well as the brain and spinal cord.
Q. I have decided to donate my tissue, what
should I do next?
First, let your next-of-kin know that you intend to
donate tissues, including brain, spinal cord, and in
Friedreich’s ataxia also heart and pancreas. Tissues
are harvested by autopsy, and your next-of-kin will have to
sign a formal permission document. Living
patients
who inquire about tissue donation receive a
consent
form to enroll as participants with emphasis on
their
disease. Their next-of-kin, however, become the ultimate donors and secondary research participants.
They must complete a new set of documents.
Q. What kind of consent must be given for a
donation?
One is formal permission to be enrolled in this research
program; the second authorizes release of your private
and protected health information to Dr. Koeppen. The“permission” document requires the signature of a
witness. To be legally binding, Dr. Koeppen will discuss the consent forms with you over the phone. If you
have trouble speaking, you may request that a relative
speak with him about the forms and the investigation.
Q. Will my family have access to the results
from my tissue donation?
Yes. Feedback to families and the involved physician
(at the family’s request) is part of the process. A report
and cover letter which often contains diagnostic
information is mailed to them. Tissues are not intended
for transplantation but some families offer donation of
corneas and other tissues that are not affected by ataxia
or co-existing illnesses.
Q. What are the final steps for tissue donation?
Tissues will be collected according to a specific
protocol that Dr. Koeppen forwards to the collaborating
pathologist. Your next-of-kin will sign a consent form
that allows Dr. Koeppen to use the collected tissue for
research.
Q. Are there costs involved?
It is important to note that in some cases additional
funeral expenses may apply. Some pathologists and
medical centers may request payment for the autopsy.
The sum may be as high as $1,500.
Q. What if I change my mind?
Participation is entirely voluntary. Family members
may direct the investigator at any time to end further
research, even if the autopsy has been completed and
tissues were already harvested for research. Upon
request, tissues will be destroyed.
For more information, please contact:
Dr. Arnulf Koeppen
Professor of Neurology
VA Medical Center
113 Holland Ave., Albany, NY 12208
Phone: (518) 626-6377
Fax: (518) 626-6369
Pager: (518) 343-0024
E-Mail: Arnulf.Koeppen@va.gov
