2 — BASIC CONTACT INFORMATION
* State (U.S. and Australia); Province (Canada)
* 3 — ONSET DATE: When did the symptoms of PRP first appear? Even though some PRP patients know their exact Onset Date, we only ask for the month and year. Do the best you can. EXAMPLE: An Onset Date of August 8, 2012 could be listed as “early August”. The Onset Date is used to calculate the elapsed time from (a) onset to diagnosis and (b) duration, e.g., onset to remission.
* 4 — ONSET AGE: The Onset Age for those diagnosed with PRP should just indicate the age in years, e.g., 35, 66, 82, etc. However, the Onset Age for children under the age of four (birth to toddler) diagnosed with Juvenile Onset PRP should be more specific, e.g., “at birth”, “at 5 months”, “at 2-1/2 years”. We are hopeful that this level of detail for young children will be of interest to pediatric dermatologists and researchers who focus on Juvenile Onset PRP.
* 5 — Describe the onset of your version of PRP? What symptom or symptoms signaled to you that there was a skin problem in need of a healthcare professional, e.g., dermatologist? Location(s) of the symptom(s)? Progression of symptoms from one part of your body to another. Why did you seek out a healthcare professional? Remember — the more you share, the more we all learn.
* 6 — Describe the FIRST intervention by a DERMATOLOGIST. For some PRP patients, the “first intervention” is a family doctor or general practitioner. At some point, however, the general practitioner realizes that a referral to a dermatologist is appropriate. Some of us went straightaway to a dermatologist. What was your path to a dermatologist? Again, the more you share, the more we all learn.
7 — If PRP was NOT your original diagnosis, what alternative disorders were diagnosed? What did your dermatologist “think” was the skin disorder? Use “Other” to add ANY “differential diagnoses” besides psoriasis, atopic dermatitis (eczema) and other types of dermatitis, e.g., contact, seborrheic, etc. IF PRP WAS THE FIRST AND ONLY DIAGNOSIS, PLEASE SELECT THE 4TH OPTION “OTHER” AND ENTER “ONLY PRP”.
Psoriasis
Atopic dermatitis (eczema)
Other type of dermatitis, e.g., contact, seborrheic dermatitis, etc.
* 8 — How many biopsies did it take to get a “confirmed” diagnosis of PRP? For purposes of this retrospective research survey, a single biopsy may involve the collection of several tissue samples during ONE clinic visit. Feel free to use the COMMENT field to detail your diagnostic odyssey
* COMMENT: Describe your pursuit of a diagnosis. The more you share, the more we learn. “No comment” is an acceptable answer.
* 10 — What is the PRP Diagnosis Date (month/year)? For example, a diagnosis date of “November 27, 2012 could be reported as “late November 2012” or even “November 2012”. Do the best you can.
* 11 — Who was the dermatologist who diagnosed PRP? Example: “Dr. Michael Golden, Plano, Texas (former Chief Resident at the University of Texas, Southwestern, Dallas, TX”)
12 — The general consensus within the PRP global community is that once a diagnosis of pityriasis rubra pilaris is confirmed by a dermatologist, patients are expected to LEARN MORE on their own – often with little or no direction.
Feel free to share any additional insights you might have regarding the onset and diagnosis of PRP. A comment here is not required.
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PRP Onset to Diagnosis Retrospective Survey.
