In Search of PRP Research

06.01.03  Finding research

In Search of PRP Research

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The truth be told, we really have no way of knowing what PRP-related research is currently underway or in the pipeline. That said, we do plan to find out.

We start the search for PRP research with the nation’s 555 teaching hospitals . Each institution has a dermatology department, faculty and clinicians. We intend to gather the following information:

1.    Gather basic information

✴Name of institution: University of Texas Southwestern (UTSW)

✴Department: Department of Dermatology

✴Address: 5323 Harry Hines Blvd., Dallas, Texas 75390

✴Phone: 214-648-3493

✴Fax: 214-648-5553

✴Other contact options: n/a

2.    Confirm leadership

✴Kim Yancey, MD, Chair, Department of Dermatology

✴Ponciano Cruz, Director, Residency Program

✴Benjamin Chong, MD, Chief, Dermatology Clinic, Parkland Memorial Hospital

3.    Confirm area hospitals served

✴UT Southwestern

✴Parkland Memorial Hospital

✴Dallas Veterans Affairs Medical Center

✴Children’s Health℠ .

4.    Confirm PRP-related experience of faculty/clinicians

✴Clay Cockerell, MD, Dermatopathologist

✴Arturo Dominquez, MD (2):  BM-8765, DK-6543

✴Heather Wickless, MD (1)

5.    Confirm PRP Research Status

✴No PRP-related research at this time (04/24/2017)

6.    Confirm online access to PRP-related

✴No PRP-related documents available on this website at this time (04/24/2017)

Path Forward

The collection of the above data is straightforward.

1.     Identify PRP patients currently under treatment at a teaching hospital in the U.S.

The PRP Alliance database reports 652 PRP patients who have confirmed U.S residency. The number being treated at one of the 555 teaching hospitals is not known. There are 594 PRP patients who have not confirmed whether or not they are U.S. residents. A portion of these will, in fact, be U.S. residents. The PRP Alliance will help these PRP patients and caregivers gather the information we seek.

2.     Augment these efforts with volunteers.

3.     As a last resort, the PRP Alliance will seek funding to collect the remaining data.

Anticipated Outcome

✴Identify previously unknown “active” PRP patients currently being treated by clinicians at teaching hospitals

✴Identify teaching hospitals and specific dermatologists with experience treating PRP

✴Advocate the referral of future “active” PRP patients to the National Institutes of Health, Genetic and Rare Disease Information Center. The PRP Alliance and the PRP Facebook Support Group are listed under “Support Organizations”

Advocating PRP Research

06.01.02  Advocating PRP Research

As published in On the Road… (April 1, 2014, page 3)

by  Bill McCue

In Search of Answers
From the outset, the 2014 PRP Worldwide Census was designed to answer four questions to satisfy my own curiosity:

1.What are the variations in onset age? I was 66.

2.What are the variations in onset symptoms? I had a blemish on my forehead.

3.What are the diseases that delay the timely diagnosis of PRP? I was misdiagnosed with seborrheic dermatitis.

4.Are there really 792 “active” PRP patients in the U.S. and who are the 15 active PRP patients in the Dallas-Fort Worth “Metroplex” besides me?

The PRP Worldwide Census is not medical research. It is primarily a simple survey to better define our own PRP community. The PRP Census does provide, however, a snapshot of a patient population ripe for medical research.

Onset Age

Why is onset age important? Seriously, I don’t have a clue. Personally, I wanted to know more about the experiences of the PRP patients in the “60 to <70” group. Perhaps the Onset Age data will inspire a medical research project somewhere? Who knows? And that’s the point.

Onset of Symptoms

The PRP Census effort has already chronicled the onset symptoms for 477 PRPers. The range of symptoms and where they appear underscores how each case of PRP is as unique as a snowflake.

Words used to described the onset symptoms:

•A total of 294 patients used the term rash (201), spot (97) or blemish (19)

•A total of 70 used the term itchy, and 57 used patches, shedding, dandruff, bumps, sunburn and peeling.

Words used to describe location of symptoms:

•A total of 283 patients indicated the location of the symptom.

•Head (168) which includes: scalp, face, forehead, head, eyes, ears and nose

•Upper torso (86) which includes chest, back (36), shoulder and torso

•Upper extremities (66): hands, arms and fingers

•Lower extremities (38): feet and legs

Misdiagnosis

The timely diagnosis of PRP has always been a front-burner issue for me. I was misdiagnosed, mistreated  for three months and hospitalized diagnosed with PRP. A total of 280 PRPers confirmed one or more misdiagnoses before their “official” PRP diagnosis. The most prevalent misdiagnoses included psoriasis (125), atopic dermatitis (71) and allergic reactions (39). Other misdiagnoses included pityriasis rosea, lupus, hives, Grover’s disease, pemphigas vulgarism  and even scarlet fever. There is work to be done by the PRP community to ensure more timely PRP diagnoses.

Status: Active vs. Remission

The PRP Census effort has confirmed 206 active PRP patients, 430 in remission and 19 deceased. Of the 206 reporting “active”, only 133 are in the U.S. which represents only 16 percent of the estimated 792.

PRP Census forms will continue to be available at www.prpalliance.com.

What is the status of PRP research?

The PRP community has long lamented the lack of PRP-specific research. In October 2012, however, PRP was moved to the front burner in Philadelphia, PA. The Dermatology and Cutaneous Biology Department at Thomas Jefferson University began significant Card14 research with the participation of a few dozen PRP patients.

Two years later, the scope of PRP research at TJU expanded dramatically to involve the clinical analysis of over 100 PRP patients. The PRP Alliance helped recruit over half of those participants from the PRP Facebook Support Group.

While PRP research is still ongoing at TJU, the PRP community has been asked to support this PRP research effort.

The Watermelon Paradigm

The definition of  a “rare disease” or a “rare disorder” varies around the world. In the U.S., for example, a “rare disease must effect less than 200,000 persons. In contrast, a rare disease in Europe is defined as one that impacts fewer than five in every 100,000.

The estimated prevalence rate for pityriasis rubra pilaris one in 400,000. What kind of a market do we represent to pharmaceutical companies worldwide? Not much. The following list compares the total population with “active” PRP patients.

❋  United States — 812 (325 million pop.)
❋  Germany 208 — (83 million pop.)
❋  France 165 (66 million pop.)
❋  United Kingdom 160 (64 million pop.)
❋  Canada 92 (37 million pop.)
❋  Australia & New Zealand 72 (30 million combined pop.)

The Watermelon Paradigm simply illustrates the challenges faced by the PRP community regarding clinical and genetic research. There are 2.5 million psoriasis sufferers in the U.S. compared to an estimated 812 “active” PRP patients. If psoriasis was represented graphically as a watermelon, then our PRP community is ONE seed. Not much market potential for a pharmaceutical company.

We Need an “official” PRP Patient Registry

According to the Patient-Centered Outcomes Research Institute, a patient registry is an “organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s).”

Let’s make it crystal clear: the PRP Alliance database is NOT an “official” PRP Patient Registry.

Thomas Jefferson University wants to build an “official” PRP Patient Registry. Unfortunately, the software for such an undertaking will cost the university over $500,000. While that cost can be amortized over several patient registry projects, someone has to “pay the piper” first — before any work begins.

While TJU seeks funding, the PRP community can support that effort by building an “unofficial” PRP Patient Registry. Towards this end we ask the PRP community to rally in support of this effort.

❋  Complete a 2017 PRP Census Form
❋  Participate in ongoing PRP research at TJU
❋  Participate in future surveys regarding the efficacy of specific drugs, e.g., Stelara, Cosentyx, etc.

We SHOULD Do the Heavy Lifting

The more PRP-related data we collect from PRP patients and their caregivers, the more information we can share with the dermatology departments at over 500 major teaching hospitals and Veteran Administration Medical Centers in the U.S.

Can we whet the appetite of potential PRP researchers by providing access to PRP patients willing to participate in focused research? We intend to find the answer to the question.

We can’t raise money for research, but our data is just another type of currency.

SG 06.01.01

Need for PRP research

06.01.00  Need for PRP research

EDITOR’S NOTE

The PRP Alliance’s MISSION STATEMENT has three separate “objectives”: (1) To improve the diagnosis of PRP; (2) To identify options for the successful treatment of PRP symptoms; and (3) To promote meaningful research on PRP.

The following article focuses on the third mission: To promote meaningful PRP research.

We need more PRP research

The PRP Alliance has identified three types of PRP-related research: (1) spontaneous, (2) opportunistic and (3) PRP community-based

Spontaneous Research 

Dana Fuchs-Telem, et. al. Tel Aviv University, Genetic research involving familial PRP and mutations in CARD14

Dr. Jouni Uitto, et. al. Stanley Kimmel Medical College at Thomas Jefferson University, Phase 1 and Phase 2

Brooke Eastham — Quality of Life research under the auspices of Partners Healthcare System in Boston, Massachusetts

The Dermatologist (April 2015, No Easy Answer) reports on research that studied the use of TNF inhibitors in PRP, noting an 80% rate of complete remission with infliximab, adalimumab or etanercept.

The PRP Alliance needs to find ways to identify research underway or conducted within the past four or five years. The PRP community is simply not in the loop … YET. 

Opportunistic Research

The PRP Alliance has a role to play as matchmaker. 

In late May, we introduced Dr. Uitto and his researchers (Dr. Matthew Keller, Dr. Qiaoli Li and Dr. Nick Ross) to Ginny Maxwell, her 10-year-old twins (Nathan and Joey) and 2-1/2-year-old daughter, Lauren. Consents have been signed and swabs will be taken and sent to Philadelphia for DNA study.

Glen Misek, Illinois, has recently begun taking Cosentyx. The PRPA alerted Novartis, manufacturer of Cosentyx regarding Glen’s use of the drug/ He is the only PRPer using the drug at the time. They are eager to see any efficacy research that Glen’s dermatologist is now just as eager to provide.

PRP community-based Research

Too often PRPers feel they are not in control of their version of PRP. We tell them they are on a journey, but they are convinced that someone else is at the wheel. Hazards are everywhere. Detours. Caution signs. 

There is one area that we are all in control of — sharing our experiences. Which treatments work and which don’t. What works on the scalp? What is better — a bath or a shower?

All this is data … and data is the currency of research. PRP is bad, but data is good. 

Let’s leverage data into meaningful research.

As published in On the Road… June 2015

What is the status of PRP research?

06.01.01  What is the status of PRP research?

[ INSERT SISYPHUS IMAGE HERE ]

The PRP community has long lamented the lack of PRP-specific research. In October 2012, however, PRP was moved to the front burner in Philadelphia, PA. The Dermatology and Cutaneous Biology Department at Thomas Jefferson University began significant Card14 research with the participation of a few dozen PRP patients.

Two years later, the scope of PRP research at TJU expanded dramatically to involve the clinical analysis of over 100 PRP patients. The PRP Alliance helped recruit over half of those participants from the PRP Facebook Support Group.

While PRP research is still ongoing at TJU, the PRP community can support this PRP research effort. Learn More [ Link to Research, TJU subpage ]

[  INSERT Watermelon image here ]

We need your help to jumpstart 2018

It took 3 days and 16 people to raise $1,225 in October, just enough to pay for the Rare Skin Disease Referral Initiative’s  initial mailing of “advocacy packets” to 88 teaching hospitals in the U.S. Bravo to all. The PRP Alliance needs another group of PRP patients and caregivers to step up and support the most important projects and activities of 2018. The new goal is $3,600.

❋  Constant Contact (annual cost): $840

The PRP Alliance pays a fee for the technology we use to gather and process the Worldwide PRP Census as well as manage the create and distribution of emails 

  National Organization of Rare Disorders (annual dues): $50

NORD is one of the most important allies we have developed over the past four years. PRP patients and caregivers seeking information about PRP will find a 5,000-word PRP Report — a coverture of the PRP Alliance and NORD.

 Coalition of Skin Diseases (annual dues): $200

As a CSD member, the PRP Alliance has been represented at the American Academy of Dermatology Association’s Annual Conference in Washington DC. Travel and lodging are covered by the AADA, out-of-pocket expenses are reimbursed.

 Rare Disease Week on Capitol Hill: $2,010.

Rare Disease Week on Capitol Hill (February 25 to March 1, 2018) brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.  Learn More

Expenses include:

  airfare: $400  lodging: $1,260  transportation to/from events: $150 ►  miscellaneous: $200.

❋  ReadyTalk Video Conferencing: $500

The use of video conferencing will become  increasingly import during 2018. Unlike Webex and GoToMeeting, ReadyTalk requires now downloading of applications. Simply click an invitational link and you will be part of the gathering.

RESULTS AS OF FEBRUARY 5, 2018

Thanks to the 81 contributors who donated a total of $5,610. We surpassed the goal by $2,010. Donations are still being accepted.

✔︎    Jandina G (Portland, OR)
✔︎    Richard L (Lansdale, PA)
✔︎    Janice & Ernie F (Plover, WI)
✔︎    Jessica H (Stone Mountain, GA)
✔︎    Janet B (Forest Lake, MN)
✔︎    Carel R (Surrey, British Columbia, Canada)
✔︎    Cheri H (Omaha, NE)
✔︎    Frank G (Fairview, NC)
✔︎    Ronald O (Sharpsville, IN)
✔︎    Derek S (Otterville, Ontario, Canada
✔︎    John K (Weston, CT)
✔︎    Mike W (Park City, UT)
✔︎    Eve J (Byron Bay, NSW, Australia)
✔︎    Leslie L (Colorado Springs, CO)
✔︎    Vincent F (Cape Coral, FL)
✔︎    Sylvia C (Wayne, NJ)
✔︎    Susan O (Amesbury, MA)
✔︎    Chelsea B (Othello, WA)
✔︎    Helen M (Madison, WI)
✔︎    Phil S (Chester, England, UK)
✔︎    Anita R (Pearl, MS)
✔︎    Corrine P (Toronto, Ontario, Canada)
✔︎    Eric S (San Luis Obispo, CA)
✔︎    Wayne M (Kyabram, Victoria, Australia)
✔︎    Jerry R (Sausalito, CA)
✔︎    David H (Scottsdale, Tasmania, Australia),
✔︎    Suzanne M (LaPlata, MD)
✔︎    Paula M (Los Angeles County, CA)
✔︎    Debra W (Winston-Salem, NC)
✔︎    Martin W (Wolverhampton, England, UK)
✔︎    Vickie B (San Diego, CA)
✔︎    Sandi H (Turtle Creek, PA)
✔︎    Aziz T (Laurens, SC)
✔︎    Diane H (Minneapolis, MN)
✔︎    Donna S (Beaumont Hills, NSW, Australia)
✔︎    Diedre H (Houlma, LA)
✔︎    Tierney R (Virginia Beach, VA)
✔︎    Bill M (Plano, TX)
✔︎    Elaine A (Reno, NV)
✔︎    Sara K (Miami,FL)
✔︎    Cay B (Berthold, CO)
✔︎    Darcy L (Colorado Springs, CO)
✔︎    Cami S (San Jose, CA)
✔︎    Sharlene C (Australia)
✔︎    Linda L (Somerset, CA)
✔︎    Roberta K (Sicklerville, NJ)
✔︎    Deborah C (Royal Palm Beach, FL)
✔︎    Marion M (Dublin, Ireland)
✔︎    Jan & Malcolm T (Ringwood, NJ)
✔︎    Joan P (Portland, OR)
✔︎    Mark & Paul A (Boston, MA)
✔︎    Joyce G & Stephen T (location n/a)
✔︎    Daina B (West Sacramento, CA)
✔︎    Jeff S (Dayton, OH)
✔︎    Nicola G (Bannockburn, Otago, New Zealand)
✔︎    Curt H (Santa Clarita, CA)
✔︎    Mark A (Boston, MA)
✔︎    Dan M (Rutland, VT)
✔︎    Burt U (Kenedy, TX)
✔︎    Gary R (Port Perry, Ontario, Canada)
✔︎    Megan Q (Grants Pass, OR)
✔︎    Carol K (Plano, TX
✔︎    Holly B (Boerne, TX)
✔︎    Jeffrey D (Rockwall, TX)
✔︎    Erin M (Boulder, CO)
✔︎    Lindsay S (Charlotte, NC)
✔︎    Beau R (San Francisco, CA)
✔︎    Stewart L (Fareham, England, UK)
✔︎    Sherilene G (Lake Jackson, TX)
✔︎    Stacy K (Hampton, VA)
✔︎    Mary H (Novato, CA)
✔︎    Pat N (San Diego, CA)
✔︎    Gena H (Merced, CA)
✔︎    John M (Sequin, TX)
✔︎    Edward B (Pacifica, CA)
✔︎    Carol F (Allen, TX)
✔︎    Pat W (Fort Townsend, MD)
✔︎    Jerry & Jodeen M (Dickinson, ND
✔︎    Guy F (Scaggsville, MD)
✔︎    Veronica L (Melbourne, Victoria, Australia)

Click Here to donate to the 2017-18 PRP Worldwide Census effort