Data Entry Instructions
The Human Biospecimen Data Collection Web site, created by RAND researchers, under contract with NIH ORD, is being used to obtain information from biorepositories about the types of human biospecimens they collect, store, and distribute for research purposes.
The Data Collection Web site contains three sections:
Note: Some internet browsers reduce the size of the screenshots. To view full-size, first click on the image and the click the magnify icon to enlarge.
- A section with general information about your repository
Screenshot - A section with contact information about key repository personnel
Screenshot - A section with detailed information about the different types of human biospecimens collected, stored, and distributed by your repository
Screenshot 1
Screenshot 2
You do not need to complete the material in one session. You can exit the Data Collection Web site at anytime and return later to complete your entry. Be sure to save your entries by clicking the "Save" button at the bottom of each page
- General Information About Each Repository
Please verify the name, address, phone number, and URL for your biorepository and provide a short abstract that provides an overview of your repository that includes things such as the purpose of the repository, a brief description of the types of tissue in your collection, and the availability of the tissues for research. - Contact Information about Key Personnel
Please verify the name and contact information of key repository personnel. To edit information for personnel listed, click on the "edit" link to the left of the name and you will be directed to the "Edit a Contact" page where you can change information. To add additional personnel, click on the "Add new" link just below "Contacts. - Detailed Information about the Types of Human Biospecimens at Each Repository
To provide information about the different types of human biospecimens collected, stored, and distributed by your repository using the Web-based data entry pages, please click on the "Add new on Web" link just below "Specimens" and you will be directed to the "Add New Specimens" page.
Several of the fields on the "Add New Specimens" page have several drop-down menus for you to choose entries. Please note that some drop-down menus include the choice of selecting "None" or "Unknown." You may also provide Disease information by simply entering the appropriate Online Mendelian Inheritance in Man (OMIM) Number. If you cannot find the disease name you wish to enter and cannot use an OMIM Number or if you cannot find the type of biospecimen that you wish to enter, please go to the bottom of the page and click on the link provided.
For the fields that do not have drop-down menus, please enter the information requested. For example, for "Cost per sample" please enter the cost to obtain specimens (Note: you may enter numbers or text in this box). For OMIM Number please type the appropriate number.
To edit information for specimens you have already entered, click on the "edit" link to the left of the "Disease" type, and you will be directed to the "Edit a Specimen" page where you can change information. - To upload your data as XML,
click on the "Upload XML" link below "Specimens." For a copy of the official XML schema click here. This link requires that you login. (You may need to "View source" or "Save as" because most browsers cannot render an XML schema document.)
NOTE: The Human Biospecimen Database will be publicly available. The types of information that will be available in the database are existing general information about the biospecimens collected, stored and distributed by biorepositories, such as the number and type of samples available, and how the samples are stored (e.g., paraffin blocks, slides, frozen). Information about individual samples and identifiable information about individuals who have contributed the samples will not be included in the database. Likewise, proprietary information about the repositories will not be included.
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