Sean M. Healey & AMG Center for ALS
Healey & AMG Center Biorepository
Becky Fillingham, Biorepository Manager, Sean M. Healey & AMG Center Biorepository
The Healey & AMG Center Biorepository is a branch of the larger NEALS Biorepository housing biofluid samples*. These samples are collected from people living with ALS and healthy volunteers, then shared for use by the ALS research community around the world.
*biofluid samples include blood, plasma, serum, cerebrospinal fluid, and more
The NEALS Biorepository/ALS Living Library at Mass General stores and shares over 100,000 plasma, serum, cerebro-spinal fluid and whole blood samples from people with ALS and healthy volunteers for use by the ALS research community. These samples have proven instrumental in contributing to the ALS therapeutic pipeline and the discovery of ALS biomarkers for over twenty years
For Patients & Families
What are biomarkers?
Biomarkers are indicators of what is happening inside your body. They include everything from vital signs to laboratory tests performed on your blood, bodily fluids, and tissue. The biorepository houses these samples from people living with ALS, people at risk of ALS and other neuromuscular diseases, and healthy volunteers.
What is a biorepository, also known as a living library?
A living library is a collection of biofluids used to test for potential biomarkers of ALS progression over time. These samples are shared with researchers worldwide who conduct scientific studies to find more answers for ALS or other motor neuron diseases. Research aims to find better diagnostic markers, work towards future treatments, and understand more fully the pathology of the disease.
Why should I get involved in biomarker research?
Your participation in biomarker research makes a huge contribution to science. By donating your blood and other tissues to biomarker research, you are helping scientists expand knowledge on potential biomarkers of ALS progression over time. The biomarkers may help diagnose ALS sooner, monitor ALS progression, and teach us about potential causes and treatments for ALS.
How do I get involved with biomarker research?
If you are a patient at the ALS multidisciplinary clinic at Mass General Hospital, please click on to explore currently enrolling biomarker studies at the Healey Center. Your participation in any biomarker research makes a meaningful impact.
For Researchers
For information about the sample request process, contact Becky Fillingham, the NCRI-MGH Biorepository Manager, at bfillingham@mgh.harvard.edu. Applications to request samples may be submitted through the NEALS Sample Repository portal. To read about how the biorepository has contributed to ALS research, please see:
Answer ALS
Serves as the central biorepository for Answer ALS, which is the largest observational ALS study to capture samples and data for open research purposes. Samples have been shared with over 25 academic and commercial investigators to explore various biomarkers, including genetics, protein profiles and metabolomics. Results from many of these projects are returned to the Answer ALS portal and made available to the research community.
Neurofilaments
A collaboration between Dr. James Berry at Mass General and researchers at Barrow Neurological Institute and Denali Therapeutics to examine samples collected over five years secured our knowledge about neurofilament as a biomarker and shed light on inflammatory biomarkers and their potential use in ALS drug development. “Longitudinal biomarkers in amyotrophic lateral sclerosis.”
TDP-43 splicing
Dr. Phil Wong at Johns Hopkins analyzed biofluids and showed that the loss of TDP-43 splicing repression occurs in ALS-FTD, including presymptomatic C9orf72 mutation carriers which could potentially be used as diagnostic biomarker for ALS. “A fluid biomarker reveals loss of TDP-43 splicing repression in presymptomatic ALS–FTD."
Igniting Innovation Through Research & Trials
The Healey & AMG Center for ALS unites the world's leading experts to revolutionize how treatments are developed for people with ALS.
Collaborate With Us
For more information about the Healey & AMG Center Biorepository, please contact Becky Fillingham