| New ICD Sports Registry |
Enrolling patients is the new ICD Sports Registry. This study will obtain information to determine the safety and/or risks of sports participation for individuals with ICDs. For more information call 866-207-9813 or email: ICDsports.registry@yale.edu. |
| Definition of
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Electrocardiogram
Win a FREE T-Shirt by being the first to tell us correctly how they get a 12 lead ECG with only 10 wires?
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| Survey of the Month |
| Genetic Testing Issues
This is the newest section of our newsletter designed to give our readers an opportunity to voice opinions on some of the issues that affect patients and families with inherited heart rhythm disorders.
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There are many ways to show you C.A.R.E. Click here to learn how you can contribute by make a donations by sending flowers thru(FlowerPetal.com), shop over 700 stores on the Internet (iGive.com) or search the Web using(GoodSearch.com -Yahoo powered) and help C.A.R.E.
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Mission: To formulate, promote and lead initiatives to prevent sudden cardiac death due to acquired and heritable heart rhythm disorders by:
· Advocating increased support for comprehensive scientific research and clinical trials.
· Educating patients, the public and healthcare professionals to increase awareness.
· Advancing strategies to identify, protect and support at-risk individuals and their families. |
| Dear Cheryl,
Welcome to the second issue of C.A.R.E. E-NEWS. We hope that you will find the stories and information provided herein helpful and encouraging like the announcement below:
GINA Passes in the House!
On April 25, the Genetic Information Nondiscrimination Act (H.R.493) passed the House of Representatives. Representative Slaughter (D-NY) and Representative Biggert (R-IL), GINA's lead sponsors, spoke to the need for protections against genetic discrimination and thanked the House chairs of the committees of jurisdiction for their work to move the bill. Members of the House from both sides of the aisle stood in support of GINA and called for a favorable vote on the legislation. The bill was passed with a 420-3 vote under the suspension of the rules. Read the press release. |
Update on International Long QT Registry
The International Long QT Registry has enrolled more than 1200 families since it was established in 1979 by Arthur J. Moss, MD and Peter J. Schwartz, MD. As of July 1, 2003, the Registry stopped enrolling new families and is focusing efforts on gathering follow-up information from those families already enrolled.
To read "25th Anniversary of the International Long-QT Syndrome Registry", by Dr. Moss and Dr. Schwartz in the American Heart Association Journal, Circulation, go to: http://circ.ahajournals.org/cgi/content/full/111/9/1199
For individuals with Long QT and an ICD, there is an ICD-LQTS Registry to study in greater detail the effectiveness of implantable defibrillators in Long QT. Enrollment in the ICD registry involves completing a questionnaire, medical release, and consent form. Follow-up will be conducted every six months with a short questionnaire. The Registry will contact your cardiologist every four months for ICD information, operative reports and visit summaries. Heart Research and ICD LQTS also offers genetic testing for the individuals and families enrolled in the study.
Enrollment in the ICD-LQTS Registry is open to ALL patients with Long QT and an ICD. Interested patients may contact:
Betty Mykins, at (585)-273-3692 or email: Betty.Mykins@heart.rochester.edu for more information.
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Tips for Living with Rhythm Disorders
Over the past several years, C.A.R.E. has provided more than 20,000 of its "Drugs to Avoid" wallet cards to patients, physicians and other healthcare professionals. With the guidance of our Scientific Advisory Board, an updated version of the card is now available to download
http://longqt.org/PDFs/UpdatedDrugstoAvoidCard4-07.pdf.
As noted on the card, this is only a partial list of drugs to be avoided by individuals with Long QT Syndrome. The drugs listed are those known to provoke life-threatening arrhythmias. Other drugs are suspected to carry that risk and for many the risk is not known. For a complete list of drugs and additional resources, please see the University of Arizona Centers for Education and Research on Therapeutics (AZ CERT) site www.qtdrugs.org. This information is updated regularly and we encourage you to visit the site often.
Patients with Long QT Syndrome must use great caution when taking any medications, prescription, over-the-counter, dietary and herbal supplements. Medications should be taken only when absolutely necessary. You should consult your physician and pharmacist to remain current on drugs to avoid and anytime you are going to take a new medication.
Feel free to contact C.A.R.E. at care@longqt.org or 800-404-9500 with questions. You may also submit a question to AZ CERT at www.qtdrugs.org. | |
 NEW C.A.R.E. Online COMMUNITY
The C.A.R.E. Foundation announces the launch of the new and improved online Community hosted by ClinicaHealth Communities. Members will be able to connect with other members who have rhythum disorders, lost a loved one due to Sudden Cardiac Death or care for those who have had a sudden Cardiac Arrest. You may participate in discussion groups, post personal profiles with an optional photo, invite members to be friends, and build your own online support network. You can also create a personal 'blog' -- an online diary where you can feel free to express your thoughts.
Membership is free, but you will need to register for the community with a valid email address even if you were a member of our old discussion groups. Your email address will never be shared without your express permission. (Read More)
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 Is your CPR/AED training up-to-date?cle Headline
According to the American Heart Association (AHA), each year sudden cardiac arrest claims the lives of 325,000 Americans before they reach a hospital. Most cardiac arrests (~80%) occur at home and are witnessed by a family member. Unfortunately, the survival rate of cardiac arrest victims is only about 6.4%. However, by performing CPR on a cardiac arrest victim, you can double their chances of survival by circulating blood to the brain and heart until advanced medical care is available. Read full article | |
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C.A.R.E. T-Shirts
 With a background in geology, photographer Rick Ruggles is trained to notice nature's patterns and shapes. Several years ago, his eye was drawn to an unusual heart-shaped pothole, sparking an idea for a special Valentine's gift. Inspired by that single image, Rick began seeing hearts in leaves on the ground, in clouds in the sky, and rocks on the beach. To date Rick has photographed thousands of "found hearts" exactly as he finds them in nature and everyday places.
Rick is a great friend of the C.A.R.E. Foundation, encouraging us all to walk through life looking for what's positive and beautiful in the most simple of things. We are delighted to bring you his images as part of our "C.A.R.E. for your heart all year long" campaign to increase awareness and prevention of arrhythmias and sudden cardiac arrest. C.A.R.E. T-shirts and bookmarks are available on-line at www.longqt.org. For more of Rick's images, visit www.foundhearts.com. Mention C.A.R.E. when you order items and Rick will make a donation to the foundation.
Adults Price: $ 25.00
Youth Price: $20.00
(Includes Shipping)
Order Online at www.longqt.org/store-page.html
or call 800/404-9500 |
Our sincere thanks for Philips Medical Systems for their generous support of the C.A.R.E. E-Newsletter.
Please feel free to forward E-News to interested friends, family, the school nurse or coach, and your family physician. You can look forward to hearing from us again in the summer. Take CARE, | |
Mary Jo Gordon
Executive Director
Cardiac Arrhythmias Research and Education Foundation, Inc
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