VA Cooperative Studies Program (CSP)

Investigator Access

What's Available

• Research data: Clinical data on individual donors
• Biospecimens: Post-mortem brain, spinal cord and cerebral spinal fluid tissue samples

Available Documentation 

Data dictionary  

Dates Data are Available 

Currently available 

Access Criteria 

VA and non-VA investigators may request tissue and data via the Tissue Request Form. Investigators are highly encouraged to contact the VABBB before submitting an application. Applications may be submitted at any time and are reviewed monthly by a panel of subject matter experts and the VABBB Executive Committee. Final decisions about access are based on the qualifications of the investigator, scientific merit of the proposed research utilizing the tissue, quantities of tissue requested, statistical issues and availability of tissue. Investigators will be required to submit signed Material Transfer Agreements provided by the VABBB before specimens are shipped for approved requests. Tissue Request Forms may be requested from: 

• Amyotrophic lateral sclerosis (ALS) and Gulf War Veterans' Illness (GWVI) Brain Banks: Dr. Ian Robey at Ian.Robey@va.gov   /   520-792-1450 ext. 4436
• National Posttraumatic stress disorder (PTSD) Brain Bank: Sean.Roth@va.gov 

Study Characteristics

Objectives

To collect, process, store and disseminate central nervous system tissue and health information for scientists studying disorders such as amyotrophic lateral sclerosis (ALS), disorders of Veterans of the 1990-91 Gulf War, and posttraumatic stress disorder (PTSD)

Era of Service

All

Population

• VABBB for ALS: Any Veteran living who is diagnosed with ALS, suspected ALS, or its related forms
• Gulf War Veterans' Illnesses (GWVI) Brain Bank: Veterans who served during the 1990-91 Gulf War (deployed or non-deployed)
• National PTSD Brain Bank: Veterans and non-Veterans diagnosed with PTSD 

Study Design 

Prospective cohort

Time Period 

2006 - present (enrollment is ongoing)

Setting 

National

N

Tissue inventory as of 5/8/2019: 229 case participants with ALS and 45 control participants  

Recruitment Methods    

• Veterans were originally referred to the VABBB by the National Registry of Veterans with ALS. They were recruited by telephone and sent information by mail
• Veterans wishing to participate may also contact the brain bank directly

Compensation

None

Data Collected

• Biospecimens: brain and spinal cord tissue samples

Clinical data available with VABBB tissues includes:

• ALS Functional Rating Scale—Extended (ALSFRS-EX)
• Participant or care-giver administered cognitive function assessments
• Demographics (age, sex, race)
• Medical history
• Known ALS genetic mutations
• Neuropathology Report

Data Collection Methods

• VA electronic medical record
• Biannual telephone follow-up to collect clinical data until death 
• Post-mortem examination and collection of biospecimens at the closest VA Medical Center

Funding Source 

VA Biomedical Laboratory Research and Development Service (BLR&D)

Investigators

Principal Investigator: Bertrand Huber, MD, PhD

Contact 

ALS Brain Bank: 866-460-1158
GWVI Brain Bank: 855-561-7828
PTSD Brain Bank: 800-762-6609
Other Conditions, for Veterans and non-Veterans: 800-762-6609  

Selected Publications 

Brady CB, Trevor KT, Stein TD, Deykin EY, Perkins SD, Averill JG, Guilderson L, McKee AC, Renner SW, Kowall NW. The Department of Veterans Affairs Biorepository Brain Bank: A national resource for amyotrophic lateral sclerosis research. Amyotroph Lateral Scler Frontotemporal Degener. 2013 Dec;14(7-8):591-7.

Friedman MJ, Huber BR, Brady CB, Ursano RJ, Benedek DM, Kowall NW, McKee AC; Traumatic Stress Brain Research Group. VA’s National PTSD Brain Bank: A national resource for research. Curr Psychiatry Rep. 2017 Aug 25;19(10):73.

More Information

Study website
Dimensions for VA summary (Requires an account to access outside the VA network. Dimensions for VA is a database that connects publications, grants, patents, clinical trials, and policy documents)