You can help make more PRP history
The PRP global community made history earlier this year. The experiences of over 600 PRP patients have been harvested through a 12-question survey focused on the period from onset of PRP symptoms to the official diagnosis of pityriasis rubra pilaris.
The survey looks back on your own PRP journey — or the journey of the PRP patient person for whom you care. The results of the PRP onset to Diagnosis Retrospective Survey will be published as part of the upcoming PRP Awareness Month (November 2021).
Quick Overview of ON-DX Survey
- Two options: patient or caregiver. e.g., spouse, partner, parent of a minor child.
Patient name.
NAMES of PRP patients are never published without prior authorization. Since its launch in 2013, the PRP Global Database has only reported NUMBERS (how many this and how many that), never NAMES (who).
Email address.We require a valid email address for each survey in order to verify the source of the information we receive.
Location: City/town, state/province and country. Knowing your location is essential if we are to make country-by-country and state-by-state comparisons. We are NOT seeking street addresses, postal codes, or phone numbers.
3. Estimated ONSET DATE (month/year).
- Month and year that PRP symptoms first appeared.
- EXAMPLE: An Onset Date of August 8, 2012 could be listed as “late July or 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 — first appearance of PRP symptoms
- Identifies juvenile versus adult onset PRP
- 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 believe 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? Opportunity to share your story
- The more you share, the more we all learn.
- What symptom or symptoms of PRP signaled to you that there was a skin problem in need of a healthcare professional?
- Where was the symptom located?
- Why did you seek out a healthcare professional?
6. Describe the FIRST INTERVENTION by a dermatologist.
- For some PRP patients, the “first intervention” is a family doctor or general practitioner who is predictably befuddled. At some point, however, the general practitioner realizes that a referral to a dermatologist is appropriate. Some of us went straightaway to a dermatologist. The more you share, the more we all learn.
7. What was was not the ORIGINAL DIAGNOSIS?
- If PRP was NOT your original diagnosis, what alternative disorders (differential diagnoses) were diagnosed prior to your “official” PRP diagnosis?. List includes psoriasis, atopic dermatitis (eczema) and other types of dermatitis, e.g., contact and seborrheic.
- You have the opportunity to include any other diagnoses considered by your dermatologist.
8. HOW MANY BIOPSIES did it take to get a diagnosis of PRP?
- Options range for “no biopsies to 6 or more.”
- For purposes of this retrospective research survey, the collection of several tissue samples collected during ONE clinic visit is considered a “single biopsy”. Feel free to use the COMMENT field to detail your diagnostic odyssey.
9. Did the dermatologist who ultimately diagnosed PRP specifically instruct the dermatopathologist to “consider” or “look for” evidence of PRP?
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. Whose was your diagnosing dermatologist?
- Example: Dr. Michael Golden, Plano, Texas. You can provide additional contact information if you like.
12. The general consensus within the PRP global community is that once a diagnosis of pityriasis rubra pilaris is confirmed by a dermatologist, we are expected to LEARN MORE on our own — often with little or no direction. You are asked to respond (Yes/No) to the following statements:
- I was expected to use the internet to “learn more about PRP”,
- I was specifically referred to the National Organization of Rare Disorders’ PRP Report
- I was specifically referred to the Genetic and Rare Diseases Information Center’s PRP Report
- I was specifically referred to the PRP patient support resources, e.g., PRP Survival Guide, PRP Facebook Support Group and/or the PRP Alliance.
If you are ready to complete the 12-question Onset to Diagnosis Retrospective Survey?, CLICK HERE.