Objective: To conduct a PRP Worldwide Census.
Problem to be addressed: The PRP Community Database currently tracks 1,584 PRP patients of which 651 (41%) are members of the PRP Facebook Support Group and 217 (14%) are members of the PRP Community on RareConnect. Unfortunately, the following information is currently missing.
✽ Missing email addresses: 557
✽ Missing locations: 468
✽ Missing onset dates: 868
✽ Missing onset ages: 933
✽ Missing diagnosis dates: 889
✽ Missing status: 927
Methodology: Use the technical resources of Constant Contact to solicit and protect information.
Financial Impact: The out-of-pocket costs associated wth the conduct of the 2018 PRP Worldwide Census are limited to a monthly prescription which provides for an unlimited number of surveys.
✽ Vendor: Constant Contact
✽ Subscription: $47.97 per month; $575.64 annual
✽ Reduction is the number of missing data points
✽ Increased membership in the PRP Facebook and RareConnect communities
✽ Identification of undeliverable email addresses.
✽ Creation of charts and tables
2018 PRP Worldwide Census