Search the NeuroBioBank for Tissue Samples
The NIH NeuroBioBank contains an inventory of specimens that are available through its brain and tissue repository network, as well as some that are offered by external repositories. To select a specimen that is part of the NeuroBioBank network, simply mark the checkbox in the "Add/Remove" column. External specimens are marked with a and can only be obtained by going through the request process of the external repository. Clicking the will prompt you to visit the specimen request page of the associated external repository. When you have selected all desired NIH NeuroBioBank network specimens, click on the "Create Request" button and your checked selections will be automatically added to your request.
Information Regarding Diagnostic Categorization
Subjects contained within the NBB inventory have undergone extensive neuropathological evaluation and have been characterized using all available donor records (e.g. medical records, autopsy reports, family interviews). In general, diagnoses contained within the NBB inventory are classified based on the International Classification of Diseases (ICD-10) coding schema; however, for conditions that are inadequately represented by this categorization system, the NBB has generated codes and labels that best represent the condition(s) of the subject. The user should be aware that it is not uncommon for a subject to be diagnosed in life with one disorder, only to have the neuropathological evaluation reveal the presence of a different or additional condition(s). The user should consider this when searching / selecting specimens for inclusion in a study.
The following definitions are used to distinguish the types of diagnostic characterization of donors:
Clinical Brain Diagnosis
Psychiatric and neurologic diagnoses made based on review of clinical data, including medical records and/or interview or questionnaires administered to family members or other knowledgeable informants.
Refer to Basis of Clinical Brain Diagnosis for detailed information on clinical brain diagnostic categorization and formulation.
No Clinical Brain Diagnosis Found: Donors were evaluated for clinical brain diagnoses using all available sources of information, and the findings did not meet clinical brain diagnostic criteria. Minor clinical findings not meeting diagnostic criteria may be present in these individuals.
Insufficient Information for Clinical Brain Diagnosis: A diagnostic determination could not be achieved due to insufficient clinical information.
NB: The sources of information utilized to formulate Clinical Brain Diagnoses were updated in October 2021 and retroactively applied. Clinical Brain Diagnoses are formulated based on information about clinical symptoms. Neuropathology examination results, however, are not considered in the formulation of a Clinical Brain Diagnosis. For most donors, the Clinical Brain Diagnosis and Neuropathology Diagnosis are consistent with one another. However, results of the two diagnostic procedures may differ. Examples are provided below for clarification.
|Example Scenario:||Resulting Diagnoses:|
|Clinical data support a diagnosis of Alzheimer’s disease. This clinical diagnosis is not confirmed by neuropathological examination, which provides evidence for a diagnosis of Frontotemporal Dementia.||
|Clinical data support a diagnosis of Schizophrenia and Alzheimer’s disease. Neuropathological examination is diagnostic of Alzheimer’s disease changes.||
|Clinical data support a diagnosis of Schizophrenia. Clinical records do not support a dementia diagnosis, but neuropathological examination is diagnostic of Alzheimer’s disease changes.||
Diagnosis made based on the results of neuropathological examination by a qualified neuropathologist. Neuropathology Diagnoses are made according to standardized diagnostic criteria. Neuropathological findings not meeting diagnostic criteria (e.g., low Braak stages, sparse senile plaques, mild atherosclerosis) are not included in the Neuropathology Diagnosis.
Diagnostic pathology not present: A neuropathological examination was carried out - the findings did not meet diagnostic criteria. Minor neuropathological findings may be present in these individuals.
Not evaluated by NP: A neuropathological examination was not carried out.
Coding pending: The neuropathological examination was carried out, but diagnostic results are currently being coded.
The neuropathology diagnosis is distinct from neuropathological findings (e.g. diffuse plaques in frontal lobe, Braak stage). Providing neuropathological findings in the NBB database is underway. However, in the meantime, neuropathological findings are available for subjects upon request.
Diagnoses made based on genetic testing.
Diagnoses made based on the clinical records and review not primarily affecting the brain but can affect brain function.
Information Regarding Basis of Clinical Brain Diagnosis
Basis of Clinical Brain Diagnosis
As the procedures used to determine clinical brain diagnoses can vary across NBB sites, the level of evidence used to assign a clinical brain diagnosis to a subject is captured within the "Basis of clinical brain diagnosis" field.
Sufficient evidence exists to:
Diagnosis is based on the clinical impressions of the clinician reviewing the available information, but that information is insufficient to render a confirmed diagnosis.
The available information is insufficient to form a reasonable impression of, or to exclude, any brain-related diagnoses. These cases are used to fill requests for pilot tissue to test out methods using human post-mortem tissue.
Information Regarding De-Identified Age in Subjects Aged 89 and Older
De-Identified Age in Subjects Aged 89 and Older
As subject's age, in combination with other health information, could potentially be a unique identifier for individuals aged 89 and older, these subjects are listed as aged 89+, following HIPAA Privacy Rule.
Information Regarding the Evaluation of Large Tissue Requests
In evaluating requests for large amounts of tissue and/or many brain regions, we have adopted a key principle of stewardship and three guidelines of success, supervision and significance to consider in order to ensure that distribution of tissues are aligned with the wishes and intents of our donors and with all missions of the NeuroBioBank and each NeuroBioBank BTR site.
- Conscientious stewardship and custodianship that befit the nature of donation and that honor the intent of donors that their gift be used to serve the interests of many are core principles of postmortem human brain tissue research. Careful review of requests for extraordinary resources is essential to insure the responsible distribution and utilization of donated tissues. These reviews should include consideration of the following three guidelines:
- Does the requesting laboratory have a documented record of publication using the proposed study design and each of the proposed methods to study postmortem human brain tissue? If not, are the proposed study design and methods comparable to those of published studies by others?
- Does the request include a specific, scientific rationale for each brain region or tissue type? The rationale should include an explanation as to why each requested region or tissue type is necessary to answer the research question, including the discriminatory and/or interpretative value of each region or tissue type requested.
- Is there a robust justification for the requested amount of tissue? Nearly every methodology used to study postmortem human brain tissue requires ≤ 100mg to perform an experiment, with replicates. In these instances, requests of larger quantities of tissue must be justified by scientific and/or experimental evidence.
- Request of large quantities of tissue may suggest an intent to perform additional studies in the future without undergoing review by the NeuroBioBank. Stockpiling of tissue for future experiments unfairly restricts the availability of brain regions and tissue types for study by other requestors.
4. Scientific Significance
- Providing large quantities of tissue and/or many brain regions is appropriate when the above guidelines are met and when the request is accompanied by evidence that the questions to be addressed are of scientific significance. Scientific significance includes clear and critical scientific questions that can be answered with the proposed methodologies with anticipated results so impactful that there is a demonstrable benefit to exhausting, or substantially sampling, tissues.
- One way to demonstrate scientific significance is to provide the peer-reviewed and NIH-funded award supporting the studies that require a large quantity of tissue and/or many brain regions.
Large/extensive tissue requests are subject to additional review by the NeuroBioBank's Large, Precious, and Rare Tissue Request Committee (LPRTRC). A tissue request might be eligible for such a review, if it requests one or more of the following:
- More than 20 subjects
- Disorders with fewer than 200 subjects available in the NeuroBioBank inventory
- Rare disorders with low prevalence
- More than 3 brain regions (particularly small and/or high-demand regions, e.g., Substantia nigra, hippocampus) or tissue/biofluid types
- Biospecimen volumes or weights that exceed the NeuroBioBank's suggested standards