Pityriasis Rubra Pilaris (PRP) Community

Meet, discuss & support other patients or families living with Pityriasis Rubra Pilaris (PRP). Contribute to topics, or just share what's on your mind

BillMcCue
moderator

PRP Research Announcement

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.

The PDF will be added to LEARN >>> DOCUMENTS

QUESTIONS

Ask any questions as a REPLY to this post so the answers can be shared with everyone.

martacampabadal
moderator

Hi Bill,

The document has been added to the Learn Section > Documents. Here's the download link:
https://www.rareconnect.org/en/community/p...