Pityriasis Rubra Pilaris (PRP) Community

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BillMcCue
moderator

PRP Research Effort Ongoing

>>> PRP Alliance Newsroom
>>> FOR IMMEDIATE RELEASE
>>> April 17, 2016

PHILADELPHIA, PA — Dr. Nicholas Ross, the PRP Community’s "go-to guy" for PRP Research at Thomas Jefferson University (Sidney Kimmel Medical College), has confirmed that PRP studies and enrollment are ongoing and didn't end with the publication of “Epidemiologic, Clinicopathologic, Diagnostic, and Management Challenges of Pityriasis Rubra Pilaris: A Case Series of 100 Patients in the Journal of the American Medical Association Dermatology Section (JAMA Derm) on March 9, 2016.

"The TJU paper reflects information from the dataset that is currently available," Dr. Ross explains. "We will continue to publish further research as the cohort expands."

For those of you who paused on the word cohort, the definition in research and statistics is "a group of individuals who share a characteristic at some specific time and who are then followed forward in time, with data being collected at one or more suitable intervals.” That would be the global PRP Community.

The Institutional Review Board (IRB) at Thomas Jefferson University has asked the PRP Research Team to reconsent (update the existing consent form on file) selected patients. According to Dr. Ross, these patients have already been contacted to re-submit a consent form. As required by federal regulations, the PRP research study has been reviewed and approved by the IRB, a University committee that reviews, approves and monitors research involving humans.

ONGOING RESEARCH

The PRP Researchers at TJU plan to continue working on various aspects of the diagnosis and management of PRP. This includes efforts to obtain governmental funding for a PRP Patient Registry to hopefully expand access to research.

Dr. Ross notes that a PRP Patient Registry is a "labor-intensive and expensive undertaking. We intend to apply for National Institutes of Health funding and seek other grant opportunities." While such efforts invariably take time, the building of a PRP Patient Registry to support future PRP research is consistent with the PRP Alliance mission: to advocate an increase in PRP-specific research.

The current PRP Community Database is strictly basic metrics, e.g., onset data, onset age, first appearing symptom, number of biopsies require confirm a PRP diagnosis, and the efficacy of retinoids, immunosuppressants and biologics in the successful treatment of PRP

Unlike this core data, the PRP Patient Registry will be built under the watchful eyes of Dr. Jouni Uitto, chair of the Dermatology and Cutaneous Biology Department with Dr. Ross keeping the effort on a track. It will be SCHOLARLY and SCIENTIFIC undertaking and suitable for ongoing research.

PATH FORWARD

Dr. Ross has confirmed that ANYONE diagnosed with PRP — adult or juvenile — may enroll in the ongoing Thomas Jefferson University PRP Research Project, including the collecting of genetic samples. He emphasizes that this is a WORLDWIDE study that already includes: the United States, Canada, United Kingdom, Switzerland, The Netherlands, Germany, France, Sweden, Denmark, Dubai, Australia, and New Zealand.

If you have yet to participation TJU's PRP Research Project, please completed and submit the following documents:

(1) Informed Consent Document for Human Subjects Research — download PDF at http://prpalliance.com/wp-content/uploads/...

(2) PRP Patient Clinical Survey — download PDF at http://prpalliance.com/wp-content/uploads/...

There are three ways to submit the documentation:

(1) Mail (preferred): Department of Dermatology & Cutaneous Biology, Attn: Dr. Nick Ross, 833 chestnut Street, Suite 740, Philadelphia, PA 19107

(2) Fax: 1-215-503-3333 (Jefferson Dermatology Associates)

(3) Scanned email attachment: Nicholas.Ross@jefferson.edu (data-secure email address)

Every member of the PRP Community should consider participating in the ongoing PRP research at Thomas Jefferson University.

For more information about PRP Research, please visit the PRP Survival Guide, Part 1 (Understanding PRP) and the subsection titled: "PRP Research Initiatives". GO TO: http://prpalliance.com/2015/04/11/prp-rese...

# # #

Hi Bill

The consent form indicates a 22 July 2016 expiration. The Patient form indicates "end of Study" and the year 2014.

So now what do I do?

thx

rklprp - Richard Lehman

BillMcCue
moderator

I will check with the folks at TJU. They may already have an updated consent form posted somewhere. I will get the revised link.

Bill

I have been in touch with TJU. New forms are going through the approval process and I've been told that in a few weeks I can proceed with them

Richard Lehman
rklprp
16 Sept 2016

BillMcCue
moderator

TJU will probably send you the revised AND approved document as a link to a webpage.. Please send me that link and I will update my article here and in the PRP Survival Guide.