Correspondence: A. Sherman, Massachusetts General Hospital, Neurology Clinical Trial Unit, 149 13th Street, Room 2274, Charlestown, MA 02129, USA. Fax: 617 7247290. E-mail: avsherman@partners.org (Received 13 July 2010; accepted 6 November 2010) Amyotrophic Lateral Sclerosis, 2011; 12: 11–16 ISSN 1748-2968 print/ISSN 1471-180X online © 2011 Informa Healthcare DOI: 10.3109/17482968.2010.539233 prerequisite for high-quality biomedical research (6). According to International Society for Biological and Environmental Repositories (ISBER) (7), a BioRepository is defined as an entity that receives, stores, processes and/or disseminates specimens. In general, a BioRepository consists of a specimen bank linked to data (7,8). The value of biological samples to researchers generally correlates with complete- ness and relevance of phenotypic and clinical infor- mation associated with the samples. Amyotrophic lateral sclerosis (ALS) is a rare disease; its cause and pathogenesis is largely unknown (1,9). People with ALS exhibit extensive disease heterogeneity with survival ranging from less than three months to more than 10 years (9). The deve- lopment of biomarkers for ALS will help to better Introduction Recent advances in genomics, proteomics, and metab- olomics have prompted a need for well-annotated biological samples from both diseased and unaffected donors (4). The availability of high quality biological specimens for research purposes requires the devel- opment of standardized methods for collection, long-term storage, retrieval and distribution of spec- imens. Access to data and biomaterials is one of the key principles in realizing the potential of academic research (5). BioRepositories or BioBanks have become a neces- sity in determining the causes of human diseases, as research to improve health care demands higher numbers of adequately annotated and collected biospecimens. A well-managed BioBank is a critical ORIGINAL ARTICLE Proposed BioRepository platform solution for the ALS research community ALEX SHERMAN 1 , ROBERT BOWSER 2 , DANIELA GRASSO 1 , BREEN POWER 1 , CAROL MILLIGAN 3 , MATTHEW JAFFA 1 & MERIT CUDKOWICZ 1 1 Neurology Clinical Trials Unit, Massachusetts General Hospital, Charlestown, Massachusetts, 2 Department of Pathology, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, and 3 Department of Neurobiology and Anatomy, Wake Forest University School of Medicine,Winston-Salem, North Carolina, USA Abstract ALS is a rare disorder whose cause and pathogenesis is largely unknown (1). There is a recognized need to develop biomark- ers for ALS to better understand the disease, expedite diagnosis and to facilitate therapy development. Collaboration is essen- tial to obtain a sufficient number of samples to allow statistically meaningful studies. The availability of high quality biological specimens for research purposes requires the development of standardized methods for collection, long-term storage, retrieval and distribution of specimens. The value of biological samples to scientists and clinicians correlates with the completeness and relevance of phenotypical and clinical information associated with the samples (2,3). While developing a secure Web-based system to manage an inventory of multi-site BioRepositories, algorithms were implemented to facilitate ad hoc parametric searches across heterogeneous data sources that contain data from clinical trials and research studies. A flexible schema for a barcode label was introduced to allow association of samples to these data. The ALSBank™ BioRepository platform solution for managing biological samples and associated data is currently deployed by the Northeast ALS Consortium (NEALS). The NEALS Consortium and the Massachusetts General Hospital (MGH) Neurology Clinical Trials Unit (NCTU) support a network of multiple BioBanks, thus allowing researchers to take advantage of a larger specimen collection than they might have at an individual institution. Standard operating procedures are utilized at all collection sites to promote common practices for biological sample integrity, quality control and associated clinical data. Utilizing this platform, we have created one of the largest virtual collections of ALS-related specimens available to investigators studying ALS. Key words: ALS, BioRepository , BioBank, biomarkers