A common misconception people have about disease or injury affecting the brain is that nothing can been done. However, disease course and treatment opportunities are becoming more available because of ongoing research.
People with cognitive decline, dementia or a family history that places them at high risk can connect with health care providers who can offer a pathway into research and clinical trials to learn more about new or advanced treatment options. “Even though we don’t have cures for Alzheimer’s and related disorders, because of research, the horizon of what is possible through learning about the disease, as well as new therapies in the pipeline, is promising,” said Dr. Sonja Blum, neurologist and memory clinic director at Marshfield Clinic Health System
Marshfield Memory Registry is a pathway into research
The Memory Clinic and memory division at Marshfield Clinic Health System offers patients an opportunity for consideration of participation in research and clinical trials. Patients, family members or community members who have early cognitive decline or concerns can sign up for the Marshfield Memory Registry.
This database records and organizes patients with early symptoms, family history or at high risk for developing memory disorders. The neurology team, lead by Dr. Blum, collects patient data, which will help identify patients who are a good match for participating in research. This information also can help guide who may benefit from clinical trials locally, as well as nationwide.
Participating in clinical trials helps provide potential benefits beyond positive treatment results.
“I’ve found that patients participating in clinical research have the benefit of feeling more agency of over their disease,” Dr. Blum said. “They are contributing to understanding the disease better, with some potential benefit for themselves. This feeling of giving back has been helpful for many patients on their path of their disease.”
The Health System Memory Clinic is preparing for its first dementia-focused clinical trial. If approved at our site, this trial will offer participants monthly infusions of either a medication to treat Alzheimer’s disease or a placebo. This trial is weighted that two-thirds of the subjects will receive a treatment while the remaining receive placebos. The medication in the trial received partial FDA approval in treatment of Alzheimer’s disease last year.
“We have research and information about what the drug can do, and this study is looking at further defining the clinical benefit,” Dr. Blum said.
Brain banks offer collaborative research opportunities
A small percentage of patients may opt-in and be selected to donate tissues from their brain to brain banks for further research after they die. The brain bank saves tissues for potential research regarding degenerative brain disease. “The important factor for brain banks is the corresponding patient medical history,” said Dr. Rafael Medina-Flores, neuropathologist. For that reason, Marshfield Clinic Health System only collects and stores tissues from Health System patients.
When a patient who agrees to donate their brain tissue dies, their brain is fixated in formaldehyde for several weeks. This firms the brain tissue for the neuropathologist to cut using detailed methodology. Some of the tissue are stored in cassettes, embedded in paraffin wax. Another method is snap freezing tissue for studies that require fresh tissue. When ready, tissue samples are cut thin, stained and mounted on slides for research.
“Most of the time what we do is immunohistochemically studies. This means we have an antibody that recognizes a particular protein that can be normal or abnormal,” said Dr. Medina-Flores. “At that point we can localize the abnormal protein within the tissue.”
When a patient donates their brain tissue, the Health System works directly with the funeral home to make arrangements for the tissue collection. This work does not impact if they can have an open casket.
The brain bank and memory registry are not an avenue for people to “donate their body to science.” People who are interested in participating in that type of research should seek out a medical college for more information and potential costs to the patient or family associated with the donation.
Marshfield Clinic Health System does some of this research in collaboration with other research facilities. It contributes data and findings to nationwide research and partners with larger organizations to pool data. “For patients, the benefit is these are hard diseases that have limited treatment options. Having access to clinical trials gives them opportunity for newer treatments that offer more hope and can add on to the standard of care,” Dr. Blum said.