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Breaking Through the Fog: Introducing the Lupus Research Alliance Brain Bank Program – Information for people with lupus

The brain is one of the many organs that can be affected by lupus. In fact, up to 95% of people with lupus experience neuropsychiatric lupus (NPSLE) which describes a wide range of brain-involved symptoms — symptoms like not thinking clearly, forgetting things or even seizures, stroke and psychosis.

The Lupus Research Alliance (LRA) is breaking through the “fog” by supporting research to address NPSLE and supporting a clinical study testing a specific treatment approach.

But to gain a deeper understanding of what’s going on in the brain, it’s critical to look at human brain tissue.  Many groundbreaking discoveries have been made in other fields like autism, Parkinson’s and Alzheimer’s by studying brain tissue from deceased individuals with these diseases. Now we want to do the same in lupus!

So, the LRA is asking people with lupus to make one of the most meaningful contributions to advance our understanding of NPSLE. Please consider donating your brain to lupus research upon your passing.

The LRA has worked with the Harvard Brain Tissue Resource Center (HBTRC) to develop a program to recover donated brains from deceased individuals with lupus.

We understand that the decision to register to donate an organ for research is not an easy one and hopefully one that will only be fulfilled far into the future. But committing to donate an organ after you pass away is a priceless gift and legacy that you can bring to advance lupus treatments for others with lupus and for generations to come.

 

 

  1. First discuss with family and health professionals your desire to donate your brain after your passing. This is very important, as a family member or caretaker will need to facilitate the donation process at the appropriate time.
  2. To donate, you must be 18 years of age or older, have lupus and reside in the continental US. Potential donors should sign up below to receive registration forms.
  3. The LRA will mail you forms and a pre-stamped envelope to complete your registration. The forms must be returned either by mail or fax.
  4. Registration with the HBTRC is not required for brain donation and does not automatically mean you will be a donor. But it is a good way to tell your family, caretakers and health professionals your wishes.

  1. At the time of death, family members or caretakers should immediately call the HBTRC at 800.BRAINBANK (800.272.4622). It is critical to call as close as possible to the time of death, since the brain must be recovered within 24 hours. HBTRC staff are available 24/7, 365 days a year.
  2. HBTRC staff will first carry out a screening process to determine whether it is possible to accept the brain donation. There are certain conditions that might make it difficult to use the brain for research purposes.
  3. Once HBTRC staff members confirm that the HBTRC can accept the brain donation, they will guide the legal next of kin/legal representative through the consent process. The complete and signed Informed Consent form must be received by HBTRC staff in order to proceed with the brain donation.
  4. The HBTRC staff will coordinate with qualified professionals in the local area to recover the brain tissue, which often takes place in a funeral home or hospital.
  5. A few days after the brain donation, the HBTRC will send your family member or legal representative instructions about releasing the donor’s medical records and completing a questionnaire, which can be returned within weeks of donation.

  1. Is there a cost associated with my donation?
    No, there is no cost to you or your family.
  1. Will being a brain donor interfere with funeral arrangements?
    No, the brain recovery is done discreetly and should not affect the outward appearance or interfere with funeral arrangements.
  1. Can I change my mind?
    Yes, you may withdraw your registration at any time.
  1. Where will my brain be stored?
    Brain tissue and associated information will be securely stored at the HBTRC.
  1. Who will have access to the brain tissue to ensure its best use?
    Scientists selected by the LRA will use a rigorous review process to determine who can access the valuable samples.
  1. How will my donation help others?
    Your donation will allow researchers to see what changes occur in brain tissue among people with lupus. This could improve the way NPSLE is treated for others in the future as well as generations to come as we continue to work toward a cure!
  1. Can I still be an organ donor?
    Yes, you can be both an organ donor and a brain donor.
  1. Do I need to have NPSLE to donate?
    No, you just need to have an official diagnosis of lupus.

For more information about the LRA Brain Bank Program please call (646)-884-6084 or email us at brainbank@lupusresearch.org

Learn More About Brain Banks:
Inside a Brain Bank, Where Humans’ Most Precious Organ Is Dissected and Studied

Information for investigators interested in the Lupus Brain Bank will be available in 2020

Brain Bank Information Request

 

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