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How Biobanks Work

How Are Samples and Data Collected?

Biobanking Resources

While there is variation among the collection procedures of different biobanks, the processes outlined below are in general practice.

Tissue samples

Tissue samples are collected by medical professionals during office or hospital visits. Almost all biobanks store blood or blood components. Blood is generally very easy to collect, since almost everyone entering clinical care is likely to have a diagnostic test conducted that involves collecting blood. Blood is usually collected by a small needle stick into one of the veins near the inside of the elbow, where a single needle can be used to fill multiple tubes. It is a simple matter to collect additional tubes of blood that will be designated for research use and shipped to the biobank.

For supporting cancer research, a biobank usually also stores solid tissues. When a potential donor may have cancer, collecting solid tissue is also a straightforward process, since the removal of tissue during biopsy or surgery is the normal standard of care.

  • With a biopsy, if the patient has consented, a small piece of extra tissue can be obtained. This extra tissue would be released to the biobank only if the main biopsy samples yield an unambiguous diagnosis. Biopsy material is usually a very small amount of tissue taken during a minimally invasive procedure such as needle aspirates, small tissue snips during a scoping, or needle cores.
  • During surgery, tissue is usually removed as part of the treatment, such as excising a tumor, resecting part of an organ with inflammatory disease, or even to repair trauma. Commonly, after pathology review for patient care, a process that takes priority, a significant amount of tissue remains that can be collected for the biobank.

Data collection

Data collection for the biobank is conducted as a parallel process to tissue collection, and can begin as soon as the donor has given his or her informed consent.

Data collection is as important as the biospecimen itself, since without such annotation the biospecimen may not be useful for research.

Data to accompany the sample can be collected from many sources, all of which will be disclosed to the donor during the informed consent process. The most common source is the donor’s medical record at the institution where the biobanking process is taking place.

Unfortunately, the donor’s “medical record” is often not a single and centrally located file, nor is it necessarily in an electronic (computerized) system. The medical record may be scattered around the various departments which a patient has visited, including surgery, radiology, pathology, the pharmacy, and clinical laboratories where diagnostics were run. This far-flung distribution can make the data collection process difficult, time consuming, and expensive.

As the medical establishment has begun to move toward the use of electronic records over the last 20 years, the job has become easier. With direct electronic transmission of data, algorithms to filter identifying and sensitive data, software to reformat and quantify data, and security systems to track data access, the job has become both easier and safer for patient privacy.

Another common method for clinical data collection is through a rigorous interview process with patients themselves, their care providers, and sometimes their relatives if genetic diseases are being studied. During a clinical trial, a tool called a Case Report Form (CRF) is used, which requests the same information in a standard format from every participant. A CRF can also be used to pull specific information from the medical record. Additionally, third party databases may be accessed if such permission is granted. Cancer registries – databases that county health departments are required to maintain – are examples of such third party databases.

 

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