While there is currently no cure for ALS and other motor neuron diseases, research has led to substantial progress. We are on our way to knowing more than we ever did before. But we cannot stop here; there is much more to be learned to further increase understanding of the disease. Donation of biological samples is a vital means towards discovering urgently needed new treatment and improving upon current treatment.
Why is sample donation important to ALS research?
Collecting and storing biological samples, both fluid and tissue, can lead to improved clinical care for patients. Discoveries can include identification of biomarkers and genetic factors that contribute to ALS. This allows researchers to study how disease progresses, how to most effectively facilitate treatment, and how to observe any surfacing trends, patterns, and sub-types.
Biomarkers are molecules found in body fluids and tissues that can reveal an abnormal process, such as a condition or disease. Biomarkers may also be used to measure how well the body responds to a treatment. Because ALS can be so difficult and lengthy to diagnose, biomarkers are especially important. Validated biomarkers can play a part in earlier diagnosis by revealing structures that have been changed by ALS symptom onset.
The study of specific genetic codes is no less important. By knowing how to identify genes and their functions, researchers can better understand the role genetics plays in familial ALS and in other motor neuron diseases. Utilization of stored samples has already been shown to be a key factor in the discovery of important genes related to ALS and other motor neuron diseases.
How can I donate?
Multiple NEALS sites are actively collecting samples. While some sites may not be currently initiating research with their available samples, samples will be saved and banked for future ALS research. This serves as a vast resource and tool for researchers to utilize as new areas of ALS research emerge.
Samples are needed from ALS patients and their family members, as well as controls, people who are free of the disease. If you choose to donate, you will learn more about the specific procedures and outcomes measures through the consenting process. Specifically, the following samples are being sought:
- Cerebrospinal fluid (CSF)
- Whole blood
- Extracted DNA
- Post-mortem tissue
Sample donation is an immeasurable gift to those living with ALS, and their caregivers and families.
See our list of studies currently recruiting to find opportunities to donate samples.
Visit The ALS Association website for a list of facilities accepting brain and spinal cord tissue for ALS research.