persons living with ALS Biorepository Information

New specimen collections for the National ALS Biorepository began Fall 2016. More information on how to take part is 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 (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 (Monday through Friday from 8:30am to 5pm ET).


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.