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VA Cooperative Studies Program (CSP)

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VA Biorepository Brain Bank (VABBB)

 

Data Sharing Statement

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 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
  • National Posttraumatic stress disorder (PTSD) Brain Bank: Tarnjit Singh, MA at Tarnjit.Singh@va.gov

More information on the VABBB website

Study Characteristics

Objectives

To collect, process, store and disseminate central nervous system tissue and health information for scientists studying disorders such as ALS, disorders of Veterans of the 1990-91 Gulf War, and PTSD

Era of Service

All

Population

  • VABBB for ALS: Any Veteran living who is diagnosed with ALS, suspected ALS, or its related forms
  • 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 1/5/2018: 182 cases with ALS and 39 controls

Recruitment Method    

  • 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

  • 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 Sources 

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

Contact 

866-460-1158

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

VABBB website