Information Collection Tips
As part of the collection strategy, we recommend thinking about the best way to store and analyze the sample information. Plan what data is needed, how it will be stored for analysis, and the man-hours needed to enter the information.
Large amounts of information are usually collected for each sample. However, a study may only need a subset of this information to meet its goals. Capturing data that will never be used in a study is unproductive.
Also make sure that the data is organized in a way that it can be used for statistical analysis.
Biorepositories will usually clean and scan all requested patient information before it is sent digitally. Because the biorepositories are concerned about patient confidentiality, they may be unwilling to capture the data digitally at their site. Expect to receive scanned documents containing information that will need to be transferred. We transfer information into a database that stores sample information, test results, and answers to questionnaires. In order to obtain information from collection sites, we setup folders in the clouds for each of the biorepositories. Each repository can upload the information into their folder. This is easier than sending multiple emails.
Data entry can be tedious. Our data is entered into a database that we developed for the project. Since we are the developers and users of the database, it is easy to customize any layout for data entry. Long questionnaire entries were made easier by breaking them into sections and using dual monitors. One monitor displays the scanned sample information and the other monitor displays the database. It may also help to use colors in your layout. Since different biorepositories have their own way of collecting information, the information may be in a different order in different sample sets. The database developer may decide to create a different layout for each collection site or to make it easy to find specific questions on the same layout.
This section starts with a warning. There are many sources for clinical samples and no obvious guidelines for the quality of samples. Most US base companies, that we encountered, have a commitment to quality. However, when we started looking at commercial biorepositories, we found some problems.
Common to many industries is trying to sell based on cost. While researchers need to stay on budget, purchasing the cheapest sample may cause a lot of problems. Here are some of the issues we encountered. One company was trying to sell old samples that were not properly stored (week old blood stored in the refrigerator). Another company wanted to sell infectious disease that is not relevant in the USA. Yet another problem is staff not knowledgeable about the disease and promising tests meant for a different disease.
Samples are collected, processed, aliquoted and frozen within an hour. We also think it is important to use samples acquired in the USA since the test is intended to be used on Americans so it makes no sense to develop the test using samples from other countries. Sometimes the samples cost the same as what the foreign company offered but the quality greatly differed. Sometimes the prices varied greatly.
What seemed to work well for us is the selection of a company with a company that has an MD as the leader. It is helpful to have someone that understands disease and that is willing to discuss options.
Discussion of the collection and organization of relevant sample information is crucial to any project. Each biorepository has their own standard information that they collect for all samples. If you intend to publish the data at a later date, it is important to include diagnosis criteria and a physician signed diagnosis. With commercial biorepositories, there is a good chance that if you don’t ask for certain information upfront, you will not get that information at a later date. The type and amount of information requested will affect price. Who provides the information will also affect price.
This test is intended to be used by scientists for research purposes only.
This work was supported by the US Army Medical Research and Materiel Command under Contract No. W81XWH-13-C-0091. The views, opinions and/or findings contained in this report are those of the author(s) and should not be construed as an official Department of the Army position, policy or decision unless so designated by other documentation.