1,621 Invited to Share PRP “Core” Data

From the Editors: The PRP Community Database currently tracks 1,622 PRP patients who are now members of the PRP Facebook and/or RareConnect Communities, or are unaligned but have a valid email address. The 2017 PRP Worldwide Census begins today with a simple goal: confirm the data we have and add data we are missing.

 

If you are a PRP patient or caregiver, you have something we need.

 We can’t force you to give it to us.
 We don’t have the funds to buy it from you.
 And we would never try to steal it from you.

All we can do is ask you to share and hope you say “Yes”.

Sharing data: Are you a skeptic?

Most PRP patients/caregivers appreciate the importance of sharing data to help PRP researchers better understand pityriasis rubra pilaris. Because your information is personal and private, it is important that we safeguard any data you share. We hope that our data collection methodology encourages your enthusiastic participation in the upcoming PRP Worldwide Census.

Confidential Data — While the PRP Alliance is not required to comply with federal regulations regarding the security of protected health information (HIPAA Security Rule), the PRP Community Database is in full compliance. The data we collect about your PRP journey and the data for other PRP patients (active and in remission) is both encrypted and password protected. Moreover, the data cannot be accessed via the Internet.

De-identified Data — When shared with PRP researchers or published on the PRP Survival Guide website, your data is de-identified. Simply stated, the PRP Community Database reports numbers, not names. When your PRP-related data is published or shared, that data is disassociated with your name. There is complete and total anonymity.

The Value of Data in the Aggregate — Our PRP-related data has the greatest value when combined with the data of others.  It is the aggregation of data that will ultimately enlighten PRP researchers.

Sharing of Data — The PRP community will be notified when information contained in the PRP Community Database is shared with PRP researchers, e.g., Thomas Jefferson University, Yale University School of Medicine, etc. Such notification will include the reason why the de-identified data is being shared.

Still skeptical?


What is “Core” data?

The following datapoints represents core data. With this information we can build a profile of the worldwide PRP community.

 Elapsed time between onset and diagnosis
 Elapsed time between onset and remission
 Onset age by decade of life
 Misdiagnoses
 Biopsies as a diagnostic tool
 Survey PRP patients in remission
 Survey PRP children based n onset age

Name: Bill McCue
Even though we ask for the FIRST NAME and LAST NAME, we NEVER publish NAMES. WE ONLY report NUMBERS, e.g., How many “this” and how many “that”.

Location: Plano, TX
We are NOT looking for street addresses or ZIP Codes/Postal Codes)

Email: papa.bill@mac.com
The email address is the only way we can verify that the information we receive is from a valid source. We will send a confirming email to the email address of the person completing the PRP Census. If the email confirmation is undeliverable, the data will not be added to the database.

Onset Age: 66 years, 2 months
At what age did your PRP symptoms first appear?

Onset Date: August 8, 2012
What was the approximate date when your PRP symptoms first appeared? Because few people know the exact date Onset Date, only month and year is required, Do the best you can, e.g.,  August 8, 2012; August 2012, or even the “Summer of 2012”.

Misdiagnosis: seborrheic dermatitis
What misdiagnoses preceded your “official” PRP diagnosis? We are only concerned with the misdiagnoses of your dermatologist, not your GP. Options include psoriasis, eczema, seborrheic dermatitis, allergic reaction and other (specify)

Biopsy History: 3 biopsies inconclusive. 4th biopsy supported PRP
What role did biopsies play in your diagnosis of PRP?

Diagnosis Date: November 28, 2012
The Diagnosis Date should be as accurate as possible, e.g., November 28, 2012, November, 2012; end of November, 2012. Do the best you can.

Current Status: In remission since April 4, 2012 
Don’t worry about definitions. Given the choice between “Active” and “In Remission”, what is your current status? If “in remission”, what is your date of remission

Treatment Options (oral/injection): acitretin
All we want to know are the PRP-related drugs you were prescribed from the list retinoids, immunosuppressants and biologicals. Whether or not the drugs were successful will be the subject of a future survey. We are NOT collecting data on itch and pain relief, topical ointments, creams and lotions, sleep aids, etc. 

We are a global community. Each country has their own way of protecting a patient’s medical information. For purposes of the PRP Census, we comply with U.S. HIPAA regulations.  Even with assurances of confidentiality, data collection has never been an easy task.

Confidential Data – The data we collect about your unique PRP journey – and the data for all PRP patients (active and in remission) – is encrypted, password-protected, and not connected to the Internet.

De-identified Data – When shared with PRP researchers like those at Thomas Jefferson University and Yale University School of Medicine or published in the PRP Survival Guide, your data is de-identified. Simply stated, the PRP Community Database reports numbers, not names. Because your data is disassociated with your name, you have complete and total anonymity.
 

 

If you have any questions, Leave a Reply below. If not, your PRP Worldwide Census awaits.

 

1,621 Invited to Share PRP "Core" Data: OTR025.2

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