Have you considered donating tissue for Kennedy’s Disease research?

Since Kennedy’s Disease is a rare disorder, there is still a lot of behind the scenes testing taking place to help determine potential treatments.  One way to help is to donate tissue to the Kennedy’s Disease Association for medical research.

Below is some information taken from the KDA Tissue Donation Guide that can be found on our website. 

IMPORTANT: Preplanning is required to minimize last minute decisions and possible delays. Finding a qualified pathologist ahead of time is especially important. 


1. What research will be done on the collected tissue?

Tissue samples and results of clinical testing are made available to qualified scientists only after their research proposal is reviewed and approved by the KDA Scientific Review Board (SRB) and KDA Board of Directors. These studies may lead to improved understanding and advances in the diagnosis and treatment of Kennedy's Disease and related disorders.
Samples are provided for biochemical and genetic studies. The samples are labeled with numbers rather than names to keep donor information anonymous.

2. What tissue is collected?
 
Brain and spinal cord (with attached dorsal root ganglia) are the minimal tissues that will be collected from patients with Kennedy’s Disease. Other tissues, such as testes and skeletal muscle, could also be useful to researchers and will be collected if permission is received from the next of kin.
 


3. Is patient confidentiality maintained?
 
Yes. Patient confidentiality is strictly maintained. An autopsy number assigned at the time tissue is submitted to the tissue bank is the only identifier of tissues provided to researchers. This assigned number is devoid of all private information.
 
4. Will the funeral arrangements be delayed?
 
No, with the proper preplanning and careful coordination, there should be no delays for typical funeral arrangements. The tissue collection procedure will be performed within the first 24 hours after death.
A family member needs to be able to work with the hospital, nursing home, or funeral home to expedite the transportation from the place of death to the Medical Center or hospital, and after the collection then to the funeral home. 
 
5. Can there still be an open casket?
 
Yes, the removal of tissue does not change the appearance of the body for the funeral service.
 

6. Does donating tissue for research purposes interfere with religious beliefs?
 
No, tissue donation does not conflict with most religious beliefs. If you have any questions concerning this issue, please contact your priest, minister, imam, rabbi, or other religious leader.
 
7. Who can legally grant permission for the tissue to be removed?
 
Prior to death, an individual donor or family member can indicate their intent by signing the provisional consent. This permits your doctor to plan for the tissue collection. However, after death, the person's legal next-of-kin must authorize the tissue removal before it can be performed.
The following persons, in order of priority, may provide such consent:

• 1) Spouse
• 2) An adult son or daughter (*)
• 3) Either parent
• 4) An adult brother or sister (*)
• 5) A guardian of the decedent at the time of death. (*)
• 6) Any other person legally authorized.

(*) Note: The person must be at least 18 years old
If there are several individuals in a category, they must all agree. For example, for priority level 2 above, all adult children have equal authority and must agree. Signing a provisional consent can help others by documenting a patient's wishes.
 

8. Where is the tissue collection done?
 
The next of kin and family doctor determine this.  It is most helpful for the donor and family to make pre-arrangements with a pathologist at a nearby medical center or university hospital to collect the tissue.  Your family doctor should be able to recommend a facility in your area that can perform this service. 
Autopsies at community hospitals are not performed regularly, but academic medical centers are generally more receptive to the procedure.  

9. Are there any costs or fees involved?
 
Yes, the family will be responsible for any costs related to the actual tissue collection process as well as the transportation costs to and from the medical center or university hospital where the tissue is collected. There is no charge for the shipping of the tissue collected, the tissue storage, or for any of the research testing.
 
10. Will the Tissue Bank Coordinator help make the collection arrangements?
 
No, unfortunately the KDA and Tissue Bank Coordinator are not able to help the family locate a medical center and pathologist to perform the tissue collection. The coordinator, however, will work closely with you to facilitate arrangements to transfer the harvested tissue from the hospital or medical center to the tissue bank. 
 
A member of the KDA’s Scientific Review Board could also be made available to help answer any questions that the pathologist may have providing that the KDA has advanced notice of an impending death and autopsy.
 


11. Where is the tissue stored?
 
The tissue will be stored at a qualified tissue or organ storage facility. Currently, that location is at the University of Michigan, Medical Center.
 
12. What needs to be done when I have made a decision to become a donor?

• Preplanning is required. If the decision is made to donate tissue at the time of death, the process becomes impossible to have the collection performed in a timely manner.
• Discuss your decision with your family and agent with Medical Power of Attorney so they will understand and support your decision.
• Sign the tissue donor form included in this brochure.
• Send a copy to your next of kin, your family doctor, the intended executor of the estate, the agent under Medical Power of Attorney, and the KDA at the address shown on the front of this brochure.
• Keep a copy of the document with your other legal documents.
• Sign the Tissue Donor Card included in this brochure and carry it in your wallet.
• Ask your family doctor to recommend a suitable hospital, medical center, and pathologist.  Contact the pathologist to discuss your wishes.

If interested, please follow the link above to the KDA website to download the entire guide.  On the page there is also information on a national pathologist service if that is of interest. 

Should you have specific questions, do not hesitate to contact the KDA at info@kennedysdisease.org.