Before You Opt Out


From the Editor…

The PRP Alliance utilizes the email technology developed by Constant Contact. They manage our email list, facilitate email distribution and provide the support for email design. No one is forced to be on the PRP Community Email List. You can unsubscribe at the bottom of any email you receive. It’s that simple. But keep in mind — YOU are the needle in the haystack.

The Genesis of the Email List

By early 2013, my version of PRP had sapped ALL my energy. I was languishing in bed watching cable news. My major excursions of the day were to the bathroom and kitchen. Neither journey brought much satisfaction.

One day, however, I quite unexpectedly discovered that I could park my butt in front of my computer and “work” for hours with absolutely no fatigue. Good bye CNN. Hello iMac.

As a member of the PRP Support Group — the one founded in 1997 — I had access to an archive of over 29,000 emails written by PRP patients and caregivers. Why not learn about PRP from the experts — those who have made the journey. The numbers were daunting until I reduced it down to something manageable:

I started building a database that included what I called core data:

 Name
  Location
  Onset date
  Onset age
  Misdiagnoses
  The role biopsies played in the diagnosis of PRP
  Information about the diagnosing dermatologist
  Date of diagnoses
  Information about the treating dermatologist

I also collected email addresses — over 1,500 of them. It took nearly six months to complete the data collection.

In November 2013, I sent emails announcing the first PRP Worldwide Census to 1,500-plus PRP patients/caregivers. Predictably, within 24 hours over 500 emails bounced back as undeliverable.

I learned that there is a natural ebb and flow of PRP patients and caregivers within the PRP community. As current patients achieve some acceptable level of remission they leave,  other newly diagnosed PRP sufferers join our ranks.

Ebb and Flow

In a perfect world, the “Old timers” would hang around to counsel the “Newbies”. But for many who have traveled the road from onset to remission, the challenges of PRP are memories to be forgotten. There is nothing wrong with bailing out. But if you do, please leave us with the following:

  Onset date: mm/yyyy
  Onset age
  Data of remission: mm/yyyy

Reasons to Stay Engaged

To Help
Stay engaged if you think you can help another PRP patient cope with the challenges of body, mind and spirit. Join the PRP Facebook Support Group and the PRP Community on RareConnect. It’s free

To Show Solidarity
One definition of solidarity is “unity or agreement of feeling or action, especially among individuals with a common interest; mutual support within a group.”

Epilogue

I served in the U.S. Marine Corps (circa 1968-1971) and have lived with the motto: Once a Marine, always a Marine. The same can be said of anyone diagnosed with PRP. We travel the same road but our journeys are never the same. We have looked in a mirror to see images we cannot believe. We lament that what works for one doesn’t work for all. Yet, we can find some solace in the fact that others have survived the journey.

If you opt-out, please accept my sincere wish that you enjoy more than your fair share of health and happiness.

Bill McCue
President/Founder
PRP Alliance, Inc.

 

 

What is “Core” Data”?

The following datapoints represent the “core” data collected via the PRP Worldwide Census. With this information we can build a more accurate profile of the PRP community.

  Elapsed time between onset and diagnosis
  Elapsed time between onset and remission
  Onset age by decade of life
  Misdiagnoses
  Biopsies as a diagnostic tool
  Survey PRP patients in remission
  Survey PRP children based n onset age

Name: Bill McCue
Even though we ask for the FIRST NAME and LAST NAME, we NEVER publish NAMES. WE ONLY report NUMBERS, e.g., How many “this” and how many “that”.

Location: Plano, TX
We are NOT looking for street addresses or ZIP Codes/Postal Codes)

Email: papa.bill@mac.com
The email address is the only way we can verify that the information we receive is from a valid source. We will send a confirming email to the email address of the person completing the PRP Census. If the email confirmation is undeliverable, the data will not be added to the database.

Onset Age: 66 years, 2 months
At what age did your PRP symptoms first appear?

Onset Date: August 8, 2012
What was the approximate date when your PRP symptoms first appeared? Because few people know the exact date Onset Date, only month and year is required, Do the best you can, e.g.,  August 8, 2012; August 2012, or even the “Summer of 2012”.

Misdiagnosis: seborrheic dermatitis
What misdiagnoses preceded your “official” PRP diagnosis? We are only concerned with the misdiagnoses of your dermatologist, not your GP. Options include psoriasis, eczema, seborrheic dermatitis, allergic reaction and other (specify)

Biopsy History: 3 biopsies inconclusive. 4th biopsy supported PRP
What role did biopsies play in your diagnosis of PRP?

Diagnosis Date: November 28, 2012
The Diagnosis Date should be as accurate as possible, e.g., November 28, 2012, November, 2012; end of November, 2012. Do the best you can.

Current Status: In remission since April 4, 2012 
Don’t worry about definitions. Given the choice between “Active” and “In Remission”, what is your current status? If “in remission”, what is your date of remission

Treatment Options (oral/injection): acitretin
All we want to know are the PRP-related drugs you were prescribed from the list retinoids, immunosuppressants and biologicals. Whether or not the drugs were successful will be the subject of a future survey. We are NOT collecting data on itch and pain relief, topical ointments, creams and lotions, sleep aids, etc. 

We are a global community. Each country has their own way of protecting a patient’s medical information. For purposes of the PRP Census, we comply with U.S. HIPAA regulations.  Even with assurances of confidentiality, data collection has never been an easy task.

Confidential Data – The data we collect about your unique PRP journey – and the data for all PRP patients (active and in remission) – is encrypted, password-protected, and not connected to the Internet.

De-identified Data – When shared with PRP researchers like those at Thomas Jefferson University and Yale University School of Medicine or published in the PRP Survival Guide, your data is de-identified. Simply stated, the PRP Community Database reports numbers, not names. Because your data is disassociated with your name, you have complete and total anonymity.
 

 

If you have any questions, Leave a Reply below. If not, your PRP Worldwide Census awaits. Click Here.

European Patients Forum (EPF) Report

 

Executive Summary Introduction

The European Patients Forum (EPF) commissioned this report to give an overview of the role of patient organisations in Europe, to highlight their value as legitimate stakeholders in civil dialogue in health-related policies and to draw attention to the challenges patient organisations are facing. The objective of The Added Value of Patient Organisations is to emphasise the contribution of patient organisations in representing and voicing the situation of a speci c population that would otherwise not be represented. The main activities of patient organisations are set out in four different areas: policy, capacity- building and education, peer support and research and development (both health and pharmaceutical).

Policy

Patient organisations are invaluable partners in the policy process, providing input through stakeholder advisory groups, expert panels, European and/or national government public consultations or institutional meetings. Patient organisations are able to help policy-makers understand the experience of living with a disease or a condition. They use this “end-user perspective” to promote the interests of patients at all stages of policy development and in a range of institutional settings. Their contributions are valuable from the cross-sectoral approach of Health in all Policies (HiAP) to health and other essential services design. Through representation, mobilisation and empowerment, patient groups combine individual and social actions to gain political commitment and public support for speci c patient and general population health issues. They are experts in channeling the voice of patients by representing patients’ interests in a united, coherent and consistent way which enhances the overall balance and nuance in policy- making.

Capacity Building and Education

Patient organisations work to strengthen the organisational and governance structures of their constituencies with the aim of helping patient groups become more resilient, sustainable and effective. Patient organisations also invest in capacity-building for policy-makers, industry, academia and the media. They undertake educational initiatives to disseminate information from end- users to policy-makers and authorities and vice-versa, as well as between different stakeholders. They work to promote health literacy to help patients make sound health care decisions for themselves. They produce and review health-related information with the aim of making sure that information provided to patients is of high quality and accessible.

Peer Support

Patient organisations provide peer mentoring, counseling or listening services, and legal and financial support. In their role as peer supporters they co-deliver self-management education and deliver various forms of support into the wider patient community.

Research and Development: Health and Pharmaceuticals

Patient organisations are increasingly active research collaborators, including through setting of research priorities and data collection. They are avid advocates for greater involvement of patients in the early stages of pharmaceutical research and development, as well as Health Technology Assessment (HTA), and argue for a similar approach in research and the development of disruptive innovation. They help patients navigate the complexities of the regulatory process for medicines and raise awareness about this with the pharmaceutical industry.

Challenges

Patient organisations face many challenges when performing these activities. The lack of resources and funding is an ongoing problem in all areas of their work. There is also an overarching issue of credibility impacted by the professionalisation of the sector that can disconnect it from its base and threaten its representativeness. Furthermore, there is a systemic failure of cooperation and a culture and tradition of tokenism when it comes to working with patient organisations. A regulated and coherent legislative space that would ensure a right of access to independent, timely and adequate resources is also missing on the European level. This means that the contribution of patient organisations to health (and society) in Europe is potentially greater than it is today.

Key messages

Patient organisations need to keep their eyes on the future by focusing on their core principles: those of representing, mobilising and empowering patients and advocating for their rights. They could consider ways to educate external stakeholders about what they do, the signi cance of the added value that they bring, and why and how they work with industry partners. They can use the revolution in communications, technology, innovation, research and development to advance their connectivity, engagement and resilience in a changing world. But patient organisations cannot face these challenges alone: other actors have an important role to play as well. The following recommendations can be taken into account by other stakeholders.

CONTENTS

What is a patient organisation?

Values and activities of patient organisations

Challenges for patient organisations

Conclusions and key messages

Should the PRPA join the Autoinflammatory Alliance?

The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases. The PRP Survival Guide has signed up for the Autoinflammatory Alliance newsletter.

LEARN MORE about Autoinflammatory Alliance

 

Should the PRPA join the Autoinflammatory Alliance?

Mid-November Issue of On the Road… available

The mid-November issue of the PRP community newsletter was just emailed to 1,009 PRP patients/caregivers. If you didn’t receive an email from me, then (1) you either don’t have your email address listed in the PRP Community Database, (2) or the email address we have is undeliverable, or the newsletter ended up in “junk mail”.

Please click SUBSCRIBE and receive your copy of On The Road…Our Journey from Onset to Remission

 

As a matter of policy, your email address will NOT be shared with any third parties AND you can unsubscribe at anytime. Remember, we’re family.

otr26 Mid-November Issue of On the Road... available

 

Ichthyosis Registry

Now is the time to GET DIAGNOSED and join FIRST in playing an important role in ichthyosis research. FIRST is co-sponsoring a transformational scientific endeavor with one of the world’s leading institutions in ichthyosis research, Yale University. We encourage you to take part.  The National Registry for Ichthyosis & Related Skin Disorders, “The Registry,’ is available to investigators worldwide, and is the largest resource of ichthyosis patient information – critical data that holds the key to better, more targeted treatments, and eventual cures. The Registry, co-sponsored by FIRST is the next evolution of ichthyosis research.

Now is the time to get diagnosed, join The Registry and the new GENEration, and play your part in unlocking the future of ichthyosis research. Find out more at National Registry for Ichthyosis and Related Skin Disorders Frequently Asked Questions.  Or, to participate, please email the Registry’s Patient Coordinator Theodore Zaki at theodore.zaki@yale.edu or call the Yale lab at (203) 785-5364. It’s a simple process and does not require traveling to Yale. A member of the team will promptly respond.

 

Frequently Asked Questions

What is a Registry?

People living with a rare disease are a critical component of the research process. Without patients and families voluntarily providing detailed insights into their rare disease, researchers may be missing information that is vital to unlocking scientific puzzles that may lead to new treatments.  In the rare disease community, patient registries are especially valuable to gather this critical information because in most cases, very little is known about a particular condition.

The purpose of The Registry is to enroll people with ichthyosis to characterize their specific type of ichthyosis using defined descriptions, and to collect information about enrollees in order to advance understanding of the diagnosis, causes, and treatment of the disorders.

How can pityriasis rubra pilaris (PRP)  be included in the Ichthyosis Registry? How does Yale reconcile the fact that pityriasis rubra pilaris is NOT ichthyosis. Pityriasis rubra pilaris (L44.0) is an autoinflammatory disorder that falls under ICD-10 L00-L99: Diseases of the skin and subcutaneous tissue. In contrast, ichthyosis appears under ICD-10 Q00-Q99: Congenital malformations, deformations and chromosomal abnormalities.

How is FIRST involved? 

FIRST plays a pivotal role in The Registry. As a co-sponsor, FIRST is providing support and resources to ensure The Registry is managed, sustained, and utilized to its fullest capability. FIRST resources will support the principal investigator of The Registry, Dr. Keith Choate, and many of the functions in his laboratory at Yale University. FIRST will also allocate resources to encourage our members to enroll in The Registry and receive a genetic diagnosis.  FIRST will also support outreach to research investigators and health organizations who specialize in ichthyosis and related skin types, to utilize The Registry’s many benefits.

Why enroll in this registry?

A registry is the cornerstone to research.  Investigators working within a certain track of medical research will have access to the patient data they need to experiment, discover, and achieve medical breakthroughs. Without patient registries, the process of scientific discovery in medical treatments can be slowed, halted, or even dismissed. Studies of these disorders may take years to finish, however if a cause is found, investigators may be able to develop better tests and treatments in the future.  Participating in a registry is one of the most direct ways to participate in the future treatment and possible cures for your skin disorder.

What if I already enrolled in the Yale Disorders of Keratinization Research Project, can they use my information for The Registry? 

Yes, however your file may need to be updated or more information may be needed. When contacting Yale for more information, be sure to inform them when you were tested and/or diagnosed.

Who can access The Registry?

Investigators from universities or pharmaceutical companies interested in ichthyosis can make an application to the registry. If the proposed study has appropriate protection for human subjects and is approved by the registry advisory committee, investigators will be permitted to contact enrollees to inform them of the study opportunity. Participation in future studies is optional and you can choose which, if any, studies to join. Your information will not be transferred to these investigators. The Registry will function solely to inform you of studies relevant to your skin condition.

If I have a diagnosis from another laboratory or institution, should I still participate in the Registry? 

Yes. When contacting Yale for more information, be sure to inform them of where, when, and with whom you were diagnosed.

What does it cost to get diagnosed and be part of the registry? 

There is no cost for participating in The Registry. If you do not already have a laboratory diagnosis, Dr. Choate’s lab will perform the DNA testing under his research funding at no cost to you/your insurance.

Do I need to travel to Yale University to participate?

We will work with you/your physician to obtain all relevant medical records and consents via email or fax. Any costs of shipping will be covered by us.

How do I get diagnosed and join The Registry?

To participate, please email the Registry’s Patient Coordinator – Theodore Zaki, theodore.zaki@yale.edu or call the Yale lab at (203) 785-5364. It’s a simple process and does not require traveling to Yale. A member of the team will promptly respond.

 

ReadyTalk Meet & Greets

From the Editor…
The PRP Alliance has arranged for a 14-day Free Trial of ReadyTalk, a video conferencing platform similar to GoToMeeting but more user friendly. The plan is to schedule a series of online gatherings during the Free Trial period to discuss issues related to pityriasis rubra pilaris. Each ReadyTalk Meet & Greet will be able to accommodate 25 PRP patients and caregivers.

About the Technology

During the past year I have participated in conferences, webinars and board meeting using a variety of video conferencing platforms including GoToMeeting, WebEx and ReadyTalk. The most user-friendly product, ReadyTalk, is the platform used by the National Organization of Rare Disorders. That is why we are evaluating the platform for use in 2018.

Time Zone Challenge

The biggest challenge we face with scheduling an international gathering is the map — the Time Zone Map. While there is no “good time” for everyone, there is a “good time” for enough.

Duration

Each ReadyTalk Meet & Greets will be scheduled for a maximum of two hours. Attendees may join the gathering anytime during the two-hour window. There is NO requirement that a participant must stay for the entire two hours.

Registration

ReadyTalk Meet & Greet registration will be on a first-come, first-served basis with a maximum of 25 per gathering. The 1,627 PRP patients and caregivers listed in the PRP Community Database will be invited to register.

✽  PRP Facebook Community: 1,111
✽  PRP RareConnect Community: 233
✽  PRP Community Database email list: 1,031

Confirmation

All ReadyTalk Meet & Greet registrants will receive a confirming email with dial-in instructions. Unlike GoToMeeting and WebEx, there is no software to load. You can dial in on a smartphone for audio only or connect via the internet for audio and video.

Video Capability

All ReadyTalk Meet & Greet participants who connect via their computer will have video capability. While only six video feeds will appear at one time, everyone in the queue can have “video time” if they wish.

Agenda

There is no agenda. It’s like a face-to-face Meet & Greet at the Cracker Barrel restaurant in Columbia, SC on a Sunday morning. A gaggle of people arrive at the restaurant at a mutually agreed upon  time and place. There was no agenda.  Stories were told. Smiles are shared. Photos were taken. Friendships were reinforced.

Schedule

There is only one Ready Talk “Meet & Greet” on the schedule.

Title: PRP Kids Korner
Hosts: Joey & Nathan Murray (Ginny Maxwell’s twins)
Date & Time: TBA

If you want to host an online PRP Meet & Greet during the ReadyTalk Free Trial period, please send an email to bill.mccue@prpAlliance.org.

The ReadyTalk Meet & Greet Planner will be posted on the PRP Survival Guide.

OTR26 — Planning for PRP Town Hall Begins