2018 PRP Worldwide Census

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

Measuring Success

✽  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