National ALS Biorepository

What is the National ALS Biorepository?

The term biorepository usually refers to a facility that collects and stores samples of biological material. These samples could include blood, urine, tissue, cells, DNA, and proteins. Some medical data may also be stored along with a written consent form. These samples may be used for future research.

The National ALS Biorepository is part of the National ALS Registry. This Biorepository will include samples from persons with ALS (persons living with ALS) who are enrolled in the National ALS Registry. ATSDR developed a plan for creating this Biorepository with help from external experts. This plan describes the best ways to collect, store, and share biological samples. Persons living with ALS must give their consent to take part in the National ALS Biorepository.

This Biorepository may help scientists better understand the cause(s) of ALS. Researchers may be able to study the genetic variation in those with ALS. Analysis of these types of specimens has already proven useful in finding important genes related to ALS and other motor neuron diseases. The National ALS Registry collects epidemiological data from persons living with ALS. Connecting biological samples with these data will make the National ALS Registry more complete and useful.

How does the National ALS Biorepository work?

You must be enrolled in the National ALS Registry to take part in the Biorepository. After an individual has joined the Registry, he/she will be able to ask for more information about the Biorepository and provide his/her contact information.

Specimens that may be collected for each component of the Biorepository are below.

  • The biospecimen (in-home) part involves the collection of blood, urine, hair and fingernail clipping specimens collected from persons living with ALS in their homes.
  • The postmortem part involves the donation of brain; spinal cord; cerebral spinal fluid; and pieces of muscle, skin, and bone from persons living with ALS after they have died.

Persons living with ALS providing specimens along with the information already collected in the Registry will help make the Registry more complete. Providing specimens may help scientists better understand the cause(s) of ALS by providing researchers with access to ALS biological samples.

National ALS Biorepository/Temple University ALS Postmortem Core

The National ALS Biorepository, a component of the National ALS Registry, is excited to partner with Temple University ALS Postmortem Core led by Lyle Ostrow, MD, PhD, a neurologist and leading national ALS researcher. Dr. Ostrow’s ongoing efforts at Temple University is providing tissue samples and data to facilitate over 300 different ALS research projects in academic and industry laboratories around the world. Repository at the Temple University ALS Postmortem Core strives to fulfill these requests and provide demographic and clinical data. The National ALS Biorepository contains both postmortem samples and biospecimens (blood, urine, DNA, RNA, PBMCs, and hair and fingernail clippings); these will be integrated with the postmortem samples at Temple University ALS Postmortem Core (which includes select autopsy samples transferred from Johns Hopkins University) to send to researchers as requested. Biospecimens from the National ALS Biorepository can be linked to epidemiological data if available in the National ALS Registry. This collaboration will expand ALS opportunities in the areas of biomarker identification and genetics.

Researchers will have access to samples from both Temple University ALS Postmortem Core and the National ALS Biorepository all in one convenient request form. If you would like to request ALS samples or data for your own research, visit the National ALS Biorepository Researcher Information page. This partnership will augment and increase ALS research nationally and demonstrate the importance of the National ALS Registry to patients and researchers.

Researcher Biorepository Information?

ATSDR has developed an online tool for researchers to request samples from the National ALS Biorepository. The samples come from persons living with ALS enrolled in the National ALS Registry and, when available, can be linked to epidemiological data (e.g., smoking history, residential history, occupational history, and history of military service) collected by the Registry. ATSDR would like to invite researchers to apply for samples and data collected from persons living with ALS.

ATSDR will not consider any research that does not have IRB approval and an FDA IND or IDE number for an investigational test article, if applicable. Once submitted, ATSDR will review the application for completeness, sample availability, and relevance to ALS research. It will then be evaluated by an internal/external scientific panel.

The Registry web portal provides a tool for researchers to track the status of their applications. ATSDR estimates the approval process could take up to 60 business days from the receipt of a complete application.

To learn more about how to request samples visit the Registry Research Application page

 How can I learn more?

Please click Biorepository Research or Biorepository Samples button below to get more information on current research being conducted using National ALS Biorepository samples and the samples available for future research.

Biorepository Current Research

To learn more about current studies approved for use of Biorepository samples,  click the button below.

Biorepository Samples

To learn more about available National ALS Biorepository samples, click on the button below.

What if I have questions?

If you have questions about the National ALS Biorepository please call 1-855-874-6912 or email questions to (Monday through Friday from 8:30am to 5pm ET).

If you have questions about the National ALS Registry please call 1-877-442-9719 (Monday through Friday from 8am to 5pm ET).