From the Editor…
While the “harvesting” of information about PRP patients began in May 2013, it wasn’t until the following November when the first PRP Worldwide Census was undertaken.
Collecting “core data” from PRP patients has always been a challenge. Over the past four years, the following data has be harvested from PRP patient and caregivers. Over half the following “core data” was entered by PRP patients and caregivers on census forms and surveys. The remaining data was extracted from PRP Facebook posts and comments. (updated August 1, 2017)
Affiliations
✽ PRP Facebook Support Group: 1,023 members
✽ PRP Community on RareConnect: 207 members
✽ Nonaligned: 609
PRP Facebook Posts
✽ Total posts: 174
✽ July 1-15: 89
✽ July 16-31: 84
Location
✽ US: 674
✽ International: 527
✽ N/A: 350
Core Data
✽ Onset date: 718
✽ Onset Age: 655
✽ Diagnosis date: 698
✽ Current status: 660 (active: 397; remission: 263)
✽ Complete core data snapshot: 509
✽ No data: 287 (name only)