Amazing progress continues to be made toward the development of a secure national health information infrastructure for the bleeding disorders community. The commitment to collaborate is growing and taking hold, and is most evident in the number of HTCs now signed on as ATHN Affiliates. As of today, 106 out of 127 HTCs – 83% of all HTCs – are now ATHN Affiliates.

Momentum is building as ATHN gears up to celebrate the launch of WebTracker and to release new ATHNready disaster preparedness tools for providers and patients at the second annual ATHN Data Summit, scheduled for July 30th and 31st in Chicago. Due to popular demand we have scheduled another hands on WebTracker training session Friday, July 31st from 1 to 3:30 PM.

We hope you can join us. This year’s agenda is full of data-rich sessions, take-away resources for HTCs and new funding opportunities. Registration is easy, simply visit www.athn.org/summit.<read more>

ATHN Affiliates

ATHN Affiliates Top One Hundred

ATHN Affiliates now include 106 of 127 HTCs. For a complete listing, go to www.athn.org/affiliates.
Welcome new Affiliates and thank you to all!

ATHN Affiliate HTC Data Use and Business Associate Agreement; Patient Authorization Forms

ATHN Affiliates have agreed to collect and store data in a national database through ATHN.  Now that WebTracker is ready to go live, the vision of an ATHNdataset as a community resource that supports outcomes analysis, research, advocacy and public health reporting is becoming closer to reality.
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ATHN Gears Up To Launch New Readiness Tools

Through the ATHNready disaster preparedness initiative, ATHN has developed the ATHNready Care Continuity Plan template and guidebook with tools, training and communications materials for providers and patients to support care in the event of an emergency.
<read more>

Thank you Novo Nordisk

Eddie Williams, Vice President, Biopharmaceuticals at Novo Nordisk presents Tom Abshire, M.D., Chair, ATHN Board of Directors and Trish Dominic, ATHN Board Member with a check for year three of ATHN’s founding unrestricted grant from Novo Nordisk.
 

From The Board Room

Dr. Keith Hoots was accepted as NHLBI liaison to the ATHN Board in January 2009 as he joined NHLBI as Senior Advisor to the Director in the Division of Blood Diseases and Resources.  <read more>

Vanessa R. Byams, MPH, Health Scientist, Deputy Team Leader, Epidemiology and Surveillance Team has assumed the position as CDC liaison to the ATHN Board, replacing Roshni Kulkarni.  <read more>

ATHNdata.quality.counts

$500,000 in Funding for Data Management to be Announced at the ATHN Data Summit 2009

The ATHN Board of Directors has authorized a second round of funding for ATHN Affiliate HTCs
<read more>

HTC Spotlight 

WebTracker Use by Non-Affiliates

Not an ATHN Affiliate but still want to use WebTracker? 
<read more>

Reaching Out

Attendees of the Regional Leadership meeting were treated to a preview of WebTracker and an update of ATHN plans this spring in Atlanta, Georgia. Regional Leaders expressed enthusiasm for the release of the new web-based platform that boasts an integrated reports writer that enhances user ability to build queries and generate their own custom reports.
<read more>

European Harmonization

For a second year in a row, ATHN leadership participated in the European Association for Haemophilia and Allied Disorders (EAHAD) Congress. At this year’s second EAHAD congress, held in Munich, a number of research areas were identified as ripe for harmonization. <read more>

National Conference on Blood Disorders in Public Health

CDC Division of Blood Disorders announced the Conference on Blood Disorders in Public Health to take place March 9-11, 2010. Community leaders, including ATHN and its Affiliates, have been encouraged to submit an abstract for the conference. Priority will be given to demonstrating the application of public health strategies to promote the health or improve outcomes of people with blood disorders.  For more information, contact Chris Parker, csp2@cdc.gov.

Research

ATHN supports ongoing important research initiatives that are actively recruiting treatment centers, requesting HTC provider participation and working to add study sites. To learn more about these research opportunities including a study sponsored by The von Willebrand Disease Prophylaxis Network, the Plasminogen Deficiency Registry - Powered by ATHN, and the Severe Factor X Deficiency Study <click here>.

In Memoriam

It is with sadness that we announce the passing of Dr. Parvin Saidi on April 22, 2009.

Dr. Saidi was a pioneer for the Hemophilia and Bleeding Disorders community. She established one of the earliest Comprehensive Care Centers in the country in 1976 and served as the Director of the New Jersey Regional Hemophilia Program at UMDNJ-Robert Wood Johnson Medical School for over three decades.

She was one of the original faculty members at the then Rutgers Medical School, currently the University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School and was named Chief of the Division of Hematology and Oncology in 1972 and Professor of Medicine in 1974. In 2000 she was named the first recipient of the Melvyn and Ab Motolinsky Chair in Hematology. Dr. Saidi was an outstanding physician, recognized nationally and internationally for her work in Hemophilia and Bleeding Disorders. Her unique leadership, insightful and pro-active planning, and constant emphasis on what is ethically and medically best for the Bleeding Disorders Community led to the establishment of several progressive treatment models in New Jersey in collaboration with the New Jersey State Department of Health and Senior Services and the Hemophilia Association of New Jersey. Dr. Saidi earned numerous awards including NHF’s Physician of the Year in 2006 and most recently, the HHS Region II Regional Comprehensive Hemophilia Diagnostic and Treatment Centers posthumously honored her with an award for Outstanding Contributions to Hemophilia Care. In 2004, she was appointed by the Governor of New Jersey as Chair of the New Jersey Governor's Task Force on Women with Bleeding Disorders.

With One Voice

ATHN is working to help clarify many of the confusing terms used when discussing data and specifically health data and healthcare technology. Some confusion exists about the term Non-identifiable Limited Data Set, this simple definition helps. <read more>

SEE YOU SOON!

Join us! ATHN Data Summit 2009 , July 30th and 31st in Chicago, IL.

Meet us! XXII Congress of The International Society on Thrombosis and Haemostasis July 11th – 17th in Boston.


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Extra!

ATryn Available for Patients with Hereditary Antithrombin Deficiency

In February 2009, the U.S. Food and Drug Administration (FDA) granted marketing approval of ATryn, developed through recombinant technology, for the prevention of peri-operative and peri-partum thromboembolic events in patients with hereditary antithrombin deficiency (HD AT), a rare and potentially fatal blood clotting disorder. ATryn is not indicated for treatment of thromboembolic events in hereditary antithrombin deficient patients. The product is marketed in the U.S. by Lundbeck Inc. and manufactured by GTC Biotherapeutics, Inc. More information about ATryn and full prescribing information may be found at www.lundbeckinc.com.