2017 PRP Resources Survey

From the Editor…

Several members of the PRP Facebook Support Group have recently attempted to conduct surveys using the Facebook polling feature. They — and many others over the past four years — are to be applauded for their curiosity and initiative. No matter how basic or complex the poll or survey, there are three basic tasks to perform.

SELECT the appropriate topic
When it comes to PRP, selecting the right topic is easy. Just about any topic applies to someone in our PRP family.

ASK the right questions. Asking the right questions can be a challenge. I have posted a number of surveys in the past four years and almost immediately wish I had asked one or two additional questions.

USE the information gathered Using the information is the easiest part of the equation. All the findings can be published in the PRP Survival Guide and shared with PRP patients, caregivers and the healthcare professionals who manage our treatment.

PRP Resources Survey

The PRP Resources Survey has concluded and here are the results:

(1)  To which support group(s) do you currently belong? (123 responses)

 PRP Facebook Support Group: 120 — 97.5%
✽  PRP Community on RareConnect: 44 — 35.7%
✽  PRP Support Group: 32 — 26.0 %

Objective: Increase the number of PRP patients and caregivers who are members of both the PRP Facebook and RareConnect communities. How close can we get to 66%

(2)  Have you visited the new PRP Survival Guide? (124 responses)

✽  Yes: 44 — 34.3%
✽  No: 80 — 62.5%

Objective:  Find ways to increase traffic from the PRP Facebook and RareConnect communities  to the PRP Survival Guide. A major push is in the works for PRP Awareness Month (November 2017)

(3) The PRP Survival Guide is divided into eight chapters. Please indicate the importance or relevance to each chapter to you.

 Important:  Chapters 5 (PRP Parents and Kids) scored lowest because PRP patients diagnosed with Adult Onset have no interest in issues related to those diagnosed with Juvenile onset. Conversely, all the other chapters are of interest to PRP parents and their children.
✽  Very Important:  Chapters 1, 2
✽  Critically Important: Chapters 3, 4, 6, 7, 8

Objective: Ensure that all eight chapters are developed as co-equals in importance.

The PRP Survival Guide is now working with Constant Contact to access their online marketing tools and other resources, including survey support. What topics would you like surveyed in the future?

2017 PRP Resources Survey 

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