Biosamples

Physical biological material (postmortem brain tissue, biospecimens, cerebrospinal fluid, and cell lines) is the substrate from which much neuroscience data is derived, and unlike that derived data it cannot be copied, so its sharing depends on physical biobanks, material transfer agreements, and sample-level catalogues rather than file repositories. Cell lines are populations of cells kept alive and dividing in culture, most relevantly the patient-derived stem cell lines (iPSCs) that can be grown into neurons or brain organoids, which makes them a renewable source of human neural material that a fixed tissue sample cannot provide. This perspective covers the infrastructure that makes biological material findable and accessible for research, and how it connects to the imaging and genomic data generated from it.

Why biosamples are governed differently

A sequencing read or an MRI volume can be copied without limit, so its sharing is a question of repositories and access control. A brain tissue block is finite and consumable, so sharing it is a question of physical custody, consent for the original donation, and the agreements that govern who receives material and for what use. Biobanks therefore sit between donors and researchers as the governance layer, holding material under ethical oversight and releasing it under a material transfer agreement rather than a download licence. The data derived from a sample (its genomics, imaging, or neuropathology) follows the open or controlled-access frameworks of those modalities, but the sample itself is governed by biobank policy.

Governance and standards

BBMRI-ERIC is the European research infrastructure for biobanking, connecting national biobank networks to enable standardised sample and data sharing. Its MIABIS standard (Minimum Information About BIobank data Sharing) describes biobanks, collections, and study designs in a common form, and its Directory is a federated catalogue letting researchers find collections matching inclusion criteria. The BBMRI-ERIC Negotiator is the access-request platform connecting researchers with biobank access committees, using GA4GH DUO to encode consent terms.

Clinical and phenotypic data associated with samples are described with the same standards used in the Health and Genomics perspectives: OMOP CDM for phenotypic data, HL7 FHIR for clinical exchange, and Phenopackets for structured genotype-phenotype descriptions. The reuse of a sample’s derived data is therefore interoperable with the broader health and genomic data ecosystem, even though the material itself moves under separate agreements.

Biobanks and tissue repositories

The Netherlands Brain Bank is a long-running postmortem tissue resource, collecting brain material from donors with and without neurological and psychiatric disorders and distributing it with anonymised medical records and neuropathological diagnoses. Its programmes pair tissue with derived data, including a dedicated post-mortem MRI programme for multiple sclerosis and a neurogenomics database of transcriptome and genomics data from its tissue.

C-BIG (Clinical Biospecimen Imaging and Genetic Repository) at the Montreal Neurological Institute integrates biospecimen, clinical, neuroimaging, and genomic data from neurological-disease patients and controls into a single open platform, an example of a biobank whose physical collection and derived-data repository are operated together.

Institut de Myologie holds the Myobank-AFM tissue bank for neuromuscular disease, alongside imaging and genetic phenotyping infrastructure. The Paris Brain Institute operates a DNA and cell bank among its research platforms.

Population biobanks extend the same model to whole cohorts. UK Biobank banks blood and other samples from 500,000 participants alongside genomics, imaging, and linked health records. Lifelines is a three-generation population biobank collecting blood, plasma, and other material with longitudinal health and cognitive data. In both, the physical sample collection underpins the genomic and health data that make the cohort valuable.

Derived-data archives

Some resources hold the data derived from tissue rather than the tissue itself. Synapse AMP-AD hosts multiomics data generated from postmortem brain cohorts, where the biospecimens remain at the contributing brain banks and the portal distributes the derived molecular data. This distinction matters for discovery: a researcher seeking material works through the biobank and a material transfer agreement, while a researcher seeking the existing molecular data works through the data portal under its access terms.

For the genomic data generated from these samples and its repositories and governance, see Genomics. For the regulatory constraints on the health data linked to biobank participants, see Health. For the phenotyping standards used to describe sample donors in rare-disease research, see Rare Disease and Phenotyping.