04.Data collection07.Patient data donation - sporedata/researchdesigneR GitHub Wiki

1. Use cases: in which situations should I use this method?

  1. Allows for patients to participate in the process of data collection, often by providing biospeciments (saliva, blood, etc) along with PROMs

2. Input: what kind of data does the method require?

  1. Infrastructure to add value to patients every time they donate data.
  2. Ability to personalize information on Quality of Life as a mechanism to reward patients for their data.
  3. For hospital-based data, the willingness of clinicians and hospitals to participate.

3. Algorithm: how does the method work?

Model mechanics

Reporting guidelines for Methods

  • Variability of Brain Death Policies in the United States [1].
  • Collection of self-report information.
  • Biosample collection: saliva, blood, feces (bioma).

Data science packages

The following R packages are available:

Suggested companion methods

Learning materials

  1. Books *
  2. Articles *
  3. Sites

4. Output: how do I interpret this method's results?

Mock conclusions or most frequent format for conclusions reached at the end of a typical analysis.

Tables, plots, and their interpretation

5. SporeData-specific

Templates

Data science functions

References

[1] Greer DM, Wang HH, Robinson JD, Varelas PN, Henderson GV, Wijdicks EF. Variability of brain death policies in the United States. JAMA neurology. 2016 Feb 1;73(2):213-8.

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