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By MICHELINE LONG
Published: August 28, 2010

IMPORTANT NEW DOCUMENT

A REVIEW OF THE REVISED TASK FORCE CRITERIA FOR LAYMEN

We have just placed an important new document in our "Patient" and "Doctor" libraries. In it, David Pomfret, RPh provides an excellent, detailed and easy to read review of the new, modified Task Force Criteria for the diagnosis of ARVD/C (TFC). The document is an excellent read for those who want to learn more about how this disease is diagnosed. It is is a must read for those who are being considered for a diagnosis of ARVD/C, who have been diagnosed with it, or who have family members about whom they are concerned. Concern about family members is a real consideration since ARVD/C is mostly a genetically determined heart condition (explained in the review).

The Pomfret review begin's this way:

"In April 2010 in the Journal Circulation, a modification to the Task Force Criteria for the diagnosis of arrhythmogenic right ventricular cardiomyopathy/dysplasia (ARVC/D) was proposed by Dr. Frank Marcus and colleagues (Marcus, 2010). The following is a laymen’s explanation of the revised criteria covering the following:

• What are 'diagnostic criteria' and how are they used?

• Why were the existing criteria modified?

• A comparison of the original and new, revised criteria

• What to ask the doctor

• Implications for family members of those diagnosed with ARVC/D"

"Do the changes in the diagnostic criteria make a difference in the diagnosis of ARVC/D? There is an early indication they do. According to a scientific paper written by Moniek and colleagues (Moniek, 2010) three groups of people were studied: 1.) 105 patients with proven ARVC/D according to the original criteria, 2.) 89 of their family members, 3.) 39 patients with probable ARVC/D. The result was 64% of probable ARVC/D patients and 11% of family members were additionally diagnosed. ECG criteria and genetic testing especially contributed to the new diagnosis. So from this study, there was an important appropriate increase in the diagnosis of ARVD/C. The most important outcome was contributing to prevention of both VT and sudden death."

I would like to give a very special thanks to David Pomfret for his phenomenal effort in putting this review together for our site and for everyone concerned. David, a million times thank you for the gift of your your hard work and expertise.

By MICHELINE LONG
Published: August 25, 2010

ANNOUNCEMENT

ARVD "HEART FOR HOPE" WEBSITE

We have recently learned of a new "patient based" website about ARVD. Having reviewed it, we are pleased to announce that the "ARVD Heart for Hope" website is online sharing valuable information. We encourage our readers to visit it.

By MICHELINE LONG
Published: June 11, 2010

NEWS BULLETIN

ARVC/D CALCULATOR AVAILABLE SOON

I'm humbled. This past April I was asked if I would be interested in having a quick peek at an ARVC/D calculator which is in the works and nearly completed. I was invited to give feedback after reviewing the calculator. How do you express "doing the happy dance" as a type of, and one point in giving feedback? Perhaps the happy dance is not a very professional response, but it is certainly an honest one. Yes, I'm excited ... and I believe that well known ARVC/D researcher Dr. Frank Marcus is well pleased to learn that such a calculator will soon be available for use. Thank you Dr. Andrew Krahn of the London Health Sciences Center, University Campus, London, Ontario, Canada for inviting me to look at this new precision tool.

According to Dr. Krahn, the calculator's innovator, this tool will be made available for use to the public. Using the help of a web designer, Dr. Krahn created this database application in order to "put the new Task Force Criteria into operations." He wrote more about the tool:

"[it]allows you to collect and summarize your patient's criteria, and export [it] as a pdf."

"to be used by thoughtful people in context."

Diagnosing ARVC/D by use of the original TFC could be a little challenging -- doctors had to work their way down a check list, examining test results. Diagnosing ARVC/D by use of the new, modified TFC presents a more meticulous check list to review alongside test results. The ARVC/D calculator stands to assist doctors in making use of the new modified Task Force Criteria for diagnosis. In this writer's opinion, the bottom line on this innovative tool is that it is cost effective -- it will be provided at no expense to its users. It is practical, necessary and time saving. It may also be a tool which helps to prevent sudden deaths.

In a web discussion with Dr. Krahn I learned more:

"My sense is that the main use of this [calculator] will be for health care professionals involved in care of possible or definite ARVC patients, but it is open for everyone. ...

"We developed this tool as a simple way to make it easy for people to practice 'family' medicine by thinking about inheritance as it relates to patients and their concerns. We want this to be as accessible and easy to use as possible. Just click on the link and take it for a test drive. We have tried to let doctors interested in the area know they can use the tool to make diagnosing ARVC patients as straightforward as possible."

Thank you Dr. Krahn for your thoughtful work and making it available for use to others around the world.

By MICHELINE LONG
Published: June 10, 2010

IMPORTANT LIBRARY ADDITION

TABLE OF MODIFIED TASK FORCE CRITERIA NOW AVAILABLE IN OUR LIBRARY

We are pleased to announce a new arrival and most important addition to our site's "Doctor" library. The addition to our library is a direct result of the recently published document, "SPECIAL REPORT: Diagnosis of Arrhythmogenic Right Ventricular Cardiomyopathy/Dysplasia: Proposed Modification of the Task Force Criteria" (Circulation, Apr 2010; 121: 1533 - 1541).

Site visitors may now connect to our library to review and/or print a table holding the new modified Task Force Criteria (TFC) for the diagnosis of ARVC/D.

Stay tuned... Soon we hope to provide our site readers with a review of some of the differences between the original TFC published in 1994 and the newest, revised TFC published in 2010.

By MICHELINE LONG
Published: May 26, 2010

ANNOUNCEMENT

PROPOSED MODIFICATION OF THE TASK FORCE CRITERIA FOR DIAGNOSIS PUBLISHED

The long awaited document holding the proposed modification of the Task Force Criteria for Diagnosis of ARVC/D has arrived and been published in two leading medical journals simultaneously. Available to doctors and patients around the world, the "Special Report" entitled "Diagnosis of Arrhythmogenic Right Ventricular Cardiomyopathy/Dysplasia -- Proposed Modification of the Task Force Criteria" is complete. It can be found in Circulation, the journal of the American Heart Association and in the European Heart Journal.

A "Breaking News" article published on our site June 15, 2007 asked these questions:

"Have you been diagnosed with ARVD/C? If so, were the Task Force Criteria for the diagnosis of ARVD/C (TFC) used to determine your diagnosis?"

"... before a disease can be appropriately treated, it must first be accurately diagnosed. An accurate diagnosis of ARVD/C is made by use of the TFC, but hold on ... there is more. The aging TFC is about ready to receive a much needed face lift."

A near army of doctor/researchers participated in the effort. Coming together from France, Greece, Italy, the Netherlands, Italy, the UK and the US, their diligence resulted in far more specific and sensitive criteria for diagnosis.

The conclusion of the Special Report reads:

"The present modifications of the Task Force Criteria represent a working framework to improve the diagnosis and management of this condition."

Receiving an accurate diagnosis is important not only for a patient, but also for their family members. The patient hopes to receive the best possible treatment and most knowledgeable counseling to manage their disease. As soon as a patient learns that ARVC/D is a genetic, heritable condition, they hope for their family members to be evaluated for it. A missed diagnosis can have lethal consequences, consequences that we all want to avoid.

Our site salutes the following dedicated doctor/researchers for all that they have done in putting together this historic and much needed modification document.

Frank I. Marcus, MD, Chair William J. McKenna, MD, DSc, Co-Chair Duane Sherrill, PhD Cristina Basso, MD, PhD Barbara Bauce, MD David A. Bluemke, MD, PhD Hugh Calkins, MD Domenico Corrado, MD, PhD Moniek G.P.J. Cox, MD James P. Daubert, MD Guy Fontaine, MD, PhD Kathleen Gear, RN Richard Hauer, NW, MD

Andrea Nava, MD Michael H. Picard, MD Nikos Protonotarios, MD Jeffrey E. Saffitz, MD, PhD Danita M. Yoerger Sanborn, MD, MMSc Jonathan S. Steinberg, MD Harikrishna Tandri, MD Gaetano Thiene, MD Jeffrey A. Towbin, MD Adalena Tsatsopoulou, MD Thomas Wichter, MD Wojciech Zareba, MD, PhD

We are reminded that at one point in time a lack of funding endangered the commencement of this effort. We thank each entity, foundation and individual who rose to the call for funding, making sure that this work could safely begin and be completed.

For those of you interested in that which was formerly written in this site's news articles about the modification of the TFC, here are a few links:

Article 3: December 27, 2008

• • • • • • • • • • • • • •

News Archive 5 - December 27, 2008 through December 30, 2009 (new)
News Archive 4 - January 3, 2008 through August 29, 2008 (new)
News Archive 3 - June 15, 2007 through November 18, 2007 (new)
News Archive 2 - September 18, 2006 through May 27, 2007 (new)
News Archive 1 - December 16, 2005 through September 7, 2006 (new)

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