Research Projects
brain tissue donation project

Brain Tissue Donation Project



Research takes a very long time, so as hard as it may be to face, even though some of our SS community friends will never experience the benefits, you still have an opportunity to contribute. To make a difference to those who follow with a real chance to live a better life.

We recognize that not everyone can help financially, but we are looking for project volunteers. End-of-life donation of the brain and spinal cord tissue for superficial siderosis research is the most generous gift you can make. But, of course, it’s not a happy place, contemplating your mortality. Still, we need ten volunteers who will consent to this donation, so our project coordinator may plan the necessary steps ahead of time.

You have the opportunity to help in Dr. Levy’s quest to find answers. By improving the understanding of superficial siderosis and the pathophysiology, research will explain the functional changes at a cellular level that are occurring within an individual due to superficial siderosis. In addition, by exposing the how’s and why’s, we can empower researchers to not only discover better treatments but ultimately a pathway to healing.

We realize there is some cost involved with a donation of this type, so we are committed to raising donations so your family will not have to shoulder the burden of an added expense. All tissue and records will be under the supervision of Dr. Levy and his team. Once procurement is complete, your remains will be released to your family and will in no way interfere with internment plans.

There will be an additional process to complete the donation; your next of kin will undertake these steps on your behalf after your death. The SS patient registry will take every effort to protect your privacy. You have a choice about enrolling in this project. You have the option to opt-out of participation in this project anytime before your death.

The project coordinators will see, use, or may disclose your pre-enrollment personally-identifying information only as necessary to facilitate the organization of the project, assist in project donors’ prearrangement procurement protocols, and any essential administrative obligations. We will do everything in our power to maintain the confidentiality of your personal information, but you acknowledge in this day and age of technology, confidentiality cannot be guaranteed.

The records that identify you and the consent form signed by you may be looked at by others who have a legal right to see that information, such as:

  • U.S.federal offices or authorities such as the Office of Human Research Protections (OHRP) that protect research subjects like you.
  • If you are not a resident of the United States at the time of death any government authority or official (local or national) who has jurisdiction in these matters.
  • Officials of Harvard University
  • Dr. Michael Levy
  • Officials employed by any institution or hospital where the research is conducted.
  • Local officials having jurisdiction where your death occurs.
  • Administrative hospital staff, nursing home personnel, hospital pathologist or attending physician
  • Funeral home employees.
  • Party responsible for tissue procurement and shipment.

Dr. Michael Levy, Harvard University and all hospitals involved in this project intend the tissue collected be used to further the work towards understanding the pathophysiology of the disease identified as superficial siderosis and once a better understanding is met to continue using available tissue and data in pursuit of improving treatments that might possibly one day help patients heal.

This article first appeared on Living With Superficial Siderosis

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