PALS Biorepository Information

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. PALS, 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 PALS who click the box to request this information and provide their mailing address and phone number will be eligible. Note, not all PALS who indicate an interest in the Biorepository will get an information packet.

PALS 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 PALS 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 PALS 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).

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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.


 
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