Frequently Asked Questions

1. How is the National ALS Biorepository different from other biorepositories?

The National ALS Biorepository collects specimens from a nationally representative sample of people with ALS in the U.S. that is not tied to a specific clinic or location. Researchers can obtain complementary epidemiological data not usually collected by a biorepository, e.g., military history, family history, and occupational history. Samples are accessible to researchers around the globe regardless of institutional affiliation.

2. How do I request samples?

For information and to obtain samples, visit the National ALS Biorepository website, https://www.cdc.gov/alsresearch/, or call toll free at (855) 874-6912. Research proposals are reviewed to ensure that access to National ALS Biorepository resources is restricted to ALS research projects with appropriate oversight and protection of human subjects.

3. Are there costs associated with receiving samples?

Unlike some repositories, the cost of collection and storage of samples is not passed on to researchers requesting samples. However, researchers can expect to incur a per sample retrieval cost, along with shipping costs to deliver samples. You can call and ask for an estimate of costs to get samples.

4. Who can request samples?

Any ALS researcher, regardless of institutional affiliation or location, can request samples. You and your research do not need to be based in the U.S. The process to obtain samples is the same no matter where you are in the world.

5. Can samples from the National ALS Biorepository be matched to data or samples in other ALS biorepositories?

For some participants, the National ALS Registry has developed GUIDs (Globally Unique Identifiers) following the NEALS-Massachusetts General model. The GUID is a unique identification number that can be used to connect participants across multiple clinical studies or biorepositories. Please contact the National ALS Biorepository office for more information on what GUIDs are available and how they may be used to support your research.

6. Are longitudinal samples available?

For the National ALS Biorepository Pilot Study, two in-home biospecimen collections were conducted at 6-month intervals. Samples collected included blood, metals-free blood, urine, hair clippings and nail clippings. A limited number of samples may still be available from this study. We do not have the capability to collect prospective longitudinal samples.

7. Are samples available from persons with specific known genetic mutations?

The NIH conducts genetic analysis for the National ALS Biorepository to identify the following mutations: C9orf72, ALS2, CHCHD10, NEK1, SOD1, SPG11, TARDBP and others. A limited number of samples with these mutations are available. Please contact the National ALS Biorepository office at alsbioresearch@mcking.com for more information.

8. Do you offer biospecimen samples from the postmortem tissue donors?

Yes. All postmortem participants provided blood samples prior to postmortem tissue donation. For some of those participants, we also have urine, hair and nail samples available.

9. What form(s) do I need to complete to apply for research data from the National ALS Registry or samples from the National ALS Biorepository?

All applicants need to complete the Research Application form. Depending on what type of sample and/or data you would like, there are additional forms to be completed. These forms can be accessed through the Application Form page.