How to use the ManoBank
In many ways, the ManoBank is like any other bank; to make a withdrawal, one must make a deposit. Only those who contribute data to the ManoBank will be allowed to access the cumulative contents of the ManoBank. All prospective ManoBank users will fill out a registration form wherein the user will identify itself by Principle Investigator and/or lab name as well as disclose academic institution and/or hospital affiliation. Registration information is confidential and will not be disclosed to anyone outside of the ManoBank project administrative staff. All registrants will be vetted by the ManoBank administrator and acceptance as registered users shall be at the administrator’s discretion.
Deposits
Making a deposit in the ManoBank requires the contributed data to be completely de-identified by the registered user. Fortunately, the analysis software for commercially available high-resolution manometry (HRM) systems like those from MMS (Laborie, Mississauga, ON, Canada) and Given Image (Medtronic, Minneapolis, MN, USA) have file features that will save a portion of a study as columns of text in simple American Standard Code for Information Interchange (ASCII) files. When output in this way, subject identifiers are not included in the resulting text files.
What We Capture
Since there is usually considerable “down time” during clinical and research HRM study recordings wherein subjects are resting or between study-related activities, the ManoBank is designed to store individual swallow sequences or events of interest rather than storing an entire clinical or research recording. Once again, the commercially available HRM analysis software makes saving a ten to thirty second portion of an HRM recording easy resulting in an individual text file for uploading to ManoBank. Thus, a study of 10 swallows will result in the creation of 10 individual upload files.
Key Characteristics of the Data
Every uploading session to the ManoBank will also involve filling out a database form that identifies key characteristics of the uploaded data. These characteristics include, but may not be limited to, several demographic and clinical features such as:
- Study subject identification code
- Study subject sex
- Study subject age
- Study subject disease state (including “healthy” designation)
- Study subject ethnicity
- Study subject height
- Study subject weight
- Study subject region of residence
- System used for data acquisition
These characteristics will be linked to their uploaded files and this information will not be disseminated except in the context of database processing. By identifying the ManoBank entries in this way, ManoBank users may efficiently search the database for specific classes of patients to be downloaded for subsequent analysis. The database identification takes place on the website and the resulting list of desired studies designated by their subject identification codes would be sent to the ManoBank administrator for subsequent bundling and emailed to the registered user making the request. The user would receive the requested files in the same de-identified, text format as they were submitted.
