Pityriasis Rubra Pilaris (PRP) Community

Here's a selection of information from patients & professionals to better understand Pityriasis Rubra Pilaris (PRP).

The resources in this section have been provided by the patient organizations that specialize in Pityriasis Rubra Pilaris and other relevant documents, useful links, and brochures.

  • Differentiation of pityriasis rubra pilaris from plaque psoriasis by dermoscopy

    Pityriasis rubra pilaris (PRP) and plaque psoriasis (PP) are two distinctive erythemato-squamous skin diseases that often have to be differentiated from each other and from other similar dermatoses. Dermoscopy has been proven to aid the clinical diagnosis of several inflammatory disorders, minimizing the need for skin biopsy. Our aim was to determine the dermoscopic patterns of PRP compared to PP and to assess the significance of certain dermoscopic criteria in the diagnosis of PRP

    Author/Foundation: Arch Dermatol Res

    Year of publication: 2017, English

    Download
  • PRP RESEARCH ANNOUNCEMENT (FORM)


    Nicholas Ross MD (Sidney Kimmel Medical College at Thomas Jefferson University, Department of Dermatology and Cutaneous Biology) has asked me to “rally the troops” in support of PRP research regarding Stelara® (ustekinumab). This announcement will be shared with the PRP Facebook Support Group, PRP Community on RareConnect and the 574 "unaligned" PRP patients with email addresses.

    The PURPOSE of this specific research effort is to study the efficacy of Stelara as a treatment option for pityriasis rubra pilaris.

    PARTICIPANTS

    (1) PRP patients currently taking Stelara
    (2) PRP patients who have taken Stelara in the past

    EXPERIENCE

    What was the experience of each PRP patient’s with Stelara…
    (1) Stelara was effective
    (2) Stelara was NOT effective
    (3) Too soon to tell

    RESTRICTIONS

    (1) No geographic restrictions — participants can live ANYWHERE on planet earth.
    (2) No age restrictions — Adult Onset or Juvenile Onset

    PATH FORWARD

    (1) Confirm your interest here or via email (papa.bill@mac.com) and I will add you to the list.
    (2) Download a copy of the Patient Study Packet 11.7.16-10.5.17. Follow the instructions. Let me know if you have already sent a completed Patient Study Packet to Dr. Ross and I will confirm that you are in the study group.

    Author/Foundation: Jefferson University Physicians

    Year of publication: 2017, English

    Download
  • Epidemiologic, Clinicopathologic, Diagnostic, and Management Challenges of Pityriasis Rubra Pilaris A Case Series of 100 Patients

    Source:
    http://archderm.jamanetwork.com/article.as...

    Author/Foundation: Nicholas A. Ross, MD; Hye-Jin Chung, MD

    Year of publication: 2016, English

    Download
  • Patient Information Leaflet

    This leaflet has been written to help understand more about Pityriasis Rubra Pilaris. It tells what it is, what causes it, what can be done about it, and where you can find out more about it.

    Author/Foundation: British Association of Dermatologists

    Year of publication: 2016, English

    Download
  • Care. Share. Teach. Learn. Join. PRP Community on RareConnect

    The PRP worldwide community has evolved over the past 19 years. Patients, parents
    and rare disease advocates have found creative ways to meet the needs of all. RareConnect offers global mapping, translation services. opportunities to tell
    stories and ask questions, email connectivity and access to worldwide PRP
    resources including the PRP SURVIVAL GUIDE and PRP research initiatives.

    Author/Foundation: RareConnect team

    Year of publication: 2016, English

    Download