National ALS Biorepository

New specimen collections for the National ALS Biorepository will begin Fall 2016. More information on how to take part will be available at that time.

You must be enrolled in the National ALS Registry to take part in the Biorepository. If you are currently part of the Registry, you must update your account and choose to receive information about the National ALS Biorepository. persons living with ALS, who are not part of the Registry, should create a Registry account . When you join the Registry, you can choose to get information about the Biorepository.

Each month individuals will be selected to receive an invitation to take part in the Biorepository. This invitation will be based on geographic area. McKing Consulting Corporation will send information packets for ATSDR. Packets about the National ALS Biorepository will be sent to those who are selected. Only persons living with ALS who click the box to request this information and provide their mailing address and phone number will be eligible. Note, not all persons living with ALS who indicate an interest in the Biorepository will get an information packet.

persons living with ALS can take part in either or both parts of the National ALS Biorepository.

The biospecimen (in-home) part may involve the collection of blood, urine, hair and fingernail clipping samples collected from persons living with ALS in their homes.

The postmortem part may involve 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.

If you have questions about how to register in the National ALS Registry, please call us at 1-877-442-9719 or email us at ALSSystemAdmin@cdc.gov (Monday through Friday, 8am to 5pm ET).

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

Login

Click here to Login, if you have an account

Join the Registry

Join the Registry for research opportunities and/or to contribute information to the National ALS Registry. You do not need to open an account if you only want to learn about this registry. You can read educational information about ALS posted on our website or link to other ALS websites on our Links page.

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.

 How can I learn more?

Please click the persons living with ALS information or Researcher information button below to get more information about the National ALS Biorepository.

persons living with ALS Biorepository Information

To learn more about signing up for the National ALS Biorepository, click the button below.

Researcher Biorepository Information

To learn more about requesting samples from the
National ALS Biorepository,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 alsbiorepository@secure.mcking.com (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).