The National ALS Biorepository

Project Details

CLIENT

CORE SERVICE AREA

SKILLS

LINK

PROJECT DESCRIPTION

The Need:

The Agency for Toxic Substances and Disease Registry (ATSDR) needed assistance with establishing a biorepository of specimens from persons with Amyotrophic Lateral Sclerosis (ALS) enrolled in the National ALS Registry.

How We Helped:

McKing conducted a pilot study from 2011 to 2015 to determine the feasibility of creating a National ALS Biorepository. We developed a protocol with input from an expert panel made up of ALS researchers, neurologists, epidemiologists, advocacy representatives, and federal agency staff. Participants are enrolled across the United States to provide blood and urine samples, saliva samples, and/or postmortem tissue donation (whole brain, spinal cord, cerebral spinal fluid, bone sample, muscle sample, and skin sample). Fibroblast cell lines are created from the post-mortem skin samples. During the pilot study, hair and nail clippings were also collected.  Participants in this study were recruited from enrollees in the National ALS Registry. Following the conclusion of the pilot study, McKing promoted the availability of samples for ALS research to scientists, assisted ATSDR with the review of researchers’ sample requests, and distributed samples to approved researchers. 

Results:

At the conclusion of the pilot study in September 2015, 330 participants provided blood, urine or saliva donation. We are collecting 235-325 blood and urine samples per year and 50-150 saliva collections per year. For the postmortem part of the study, 57 participants have been enrolled, with 24 collections completed as of August 2017. McKing continues to contact the participants or their families on a quarterly basis to monitor the progress of the disease. As of September 2017, more than 3,000 samples have been distributed to researchers for analysis.

McKing has supported manuscript development in collaboration with ATSDR. Results from the pilot study were published in November 2016 and a commentary on the challenges of post-mortem tissue collection were published in February 2017.