HTCs across the country are seeing tangible financial benefits of the ATHN Affiliate program. With the newly announced data management funding program and travel support to the ATHN Data Summit, more and more HTCs recognize that the ATHN Affiliate program is an initiative whose time is now. To date, 70 HTCs have become ATHN Affiliates — more than double the number of those signed just a few brief months ago. The real strength of this growing membership is not merely in the numbers, it's in the breadth and depth of the experience, expertise and data collection the Affiliates bring in support of ATHN's mission, vision and values.

Recognizing that data quality counts highly and that quality data takes trained resources, ATHN has launched ATHNdata.quality.counts, our funding program to support data management activities in eligible federally funded HTCs. Drawing on ATHN's unrestricted grant from Novo Nordisk, Inc., the ATHN Board authorized a $400,000 initial round of funding for HTC data management. (See related article for details.) <read more>

Funding for Data Management

$400,000 Allocated for First Funding Round

The ATHN Board authorized $400,000 as an initial round of funding for data management in HTCs, launching a key benefit to becoming an ATHN Affiliate. Click here for a funding application. This newly established funding program, ATHNdata.quality.counts, represents a major step toward fulfilling ATHN's mission: to provide stewardship of a secure national database, adherent to all privacy guidelines, which will be used to support clinical care and outcomes analysis as well as research, advocacy and public health reporting. ATHN is now accepting applications for the first cycle of funding which ends September 15.

ATHNdata.quality.counts has targeted the following priorities for this first cycle:

• To secure complete and accurate core data (i.e., demographics, diagnoses, coagulation medications, surgeries, laboratory tests, contact information and insurance) for use in disaster preparedness, electronic UDC submission and patient management beyond annual visits;
• To support current Lab Tracker users to increase the amount and/or quality of their data; and/or
• To jumpstart data collection using the web-based platform of Lab Tracker® by centers who are not currently users of Lab Tracker due to lack of funds for data management staffing.

With the $400,000 set aside for this cycle, ATHN expects to make 15 awards to eligible HTCs. Selection of proposals will consider both merits of the proposal as well as financial need. Proposals not funded will automatically be considered during the subsequent round of funding. To be eligible, your center must be an ATHN Affiliate within 30 days of the award date — October 31st 2008. The process will be discussed at the ATHN Data Summit 2008 in Chicago, so bring your questions. The deadline for application is September 15, 2008. Applications may be submitted by e-mail to chaupt@athn.org. For more information and a copy of the application, click here.

Rare Coagulation Disorders Grant Funded

As steady progress moves the ATHN infrastructure forward, ATHN's strategic plan encourages research projects that appropriately use the database. With support from a two-year, $200,000 grant from Baxter Bioscience, ATHN has begun work to move its research agenda forward to improve the care and treatment of people with rare coagulation factor deficiencies, a vulnerable sub-population of the HTC patient population. <read more>

Reaching Out

ATHN and HTRS

The Hemophilia and Thrombosis Research Society (HTRS) is dedicated to advancing the care of persons with bleeding or clotting disorders through clinical research, professional mentoring, and continuing medical education. Given the complementary nature of their missions, HTRS and ATHN will consider creating a merged organization that would encompass the missions of both organizations and that builds on the strengths of each organization. <read more>

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. Simple definitions to help: <read more>

ATHN Affiliates

ATHN Data Summit 2008

Looking for up–to–date information on development of the ATHN database, its disaster preparedness plan, and key partnership within the hemostasis and thrombosis community? Want more information about becoming actively involved as an ATHN Affiliate and helping to shape ATHN's future direction? Then plan to attend ATHN's first annual data summit from July 31st through August 1st at the Westin Hotel on Chicago's beautiful lakefront. <read more>

Research Spotlight

Research Sites Needed: CHAVI 014 Being Launched

An exciting study is being conducted by the Center for HIV/AIDS Vaccine Immunology (CHAVI): "CHAVI 014: Investigation of Gene Variants Associated with Resistance and Susceptibility to HIV–1 Infection in HIV–1 Exposed but Uninfected Individuals with Hemophilia A". Consider becoming involved.

ATHN became aware of the study while participating in the inaugural meeting of the European Association of Haemophilia and Allied Disorders (EAHAD). The ATHN Project Review Panel, lead by Dr. Jeanne Lusher and composed of Drs. Judith Anderson, Jorge Di Paola, Madhvi Rajpurkar, Maggie Ragni, Harold Roberts and as well as Laurel McKernan, MSN RN encouraged ATHN to lend its assistance in recruiting U.S. sites. Likewise, the HTC Network Coordinating Committee and the UDC Working Group have independently confirmed the importance of the study. <read more>

Severe Factor X Deficiency Study — Patients Needed

Bio Products Laboratory (BPL) has recently received orphan drug status for its high–purity plasma–derived factor X concentrate, which it is developing for use in severe factor X deficiency. The hope is that it will offer advantages over the current standard treatment of PCC or FFP. Planning is underway for an international clinical trial to assess the safety, efficacy and pharmacokinetics of this product in both adult and paediatric patients. BPL has received regulatory advice from EMEA and FDA regarding the requirements of the study and is planning to start enrolling adult patients in Q4 2008. If interested, please contact Miranda Norton, BPL ClinicalStudy Manager, at miranda.norton@bpl.co.uk or phone on +44 20 8258 2661, for more information.

Plasminogen Deficiency Registry — Powered by ATHN

Plasminogen deficiency is a rare disorder that leads to numerous well–documented manifestations. Unfortunately, at this time there is no effective replacement therapy available. A variety of conditions result from this deficiency, which necessitates that several medical specialties provide care to these patients. ATHN is assisting to develop and host a web–based e–survey that will help identify patients with this disorder. <read more>

ATHN to Act as Liaison with Sponsors of Special Clinical Studies

One of the benefits of the CDC's UDC surveillance data is its ability to identify patients with bleeding disorders for special studies, such as clinical trials of new products. Up until now, connecting researchers with these patients has been difficult and inconsistent. ATHN's mission along with our link to Regional Coordinators and the CDC puts us in an ideal position to act as liaison between the study sponsors and HTCs, thus connecting potential patients for participation in these studies. <read more>

Extra!

NATF Traveling Fellowship — Funding Available

Our colleagues, the North American Thrombosis Forum (NATF), are awarding one $5,000 fellowship to cover lodging and travel for a physician (either Junior Faculty or physicians–in–training), scientist, nurse, or pharmacist to explore cross-disciplinary diagnosis, treatment, education, and research related to thrombosis. <read more>

HTC Spotlight

ATHN HTC Survey Results

Nearly 60 percent of HTCs responded to ATHN's online survey of HTCs regarding data manager issues, of which 62 HTCs were Lab Tracker users. With survey results collated and analyzed, ATHN has presented survey findings at the annual meetings of 9 of the 12 regions. <read more>

From The Board Room

ATHN Board Agreed to "Sign-on" to Letter to Support CDC Funding

The ATHN Board of Directors recently agreed to sign-on to a letter to members of Congress who sit on the Appropriations Committee to increase funding to the Centers for Disease Control and Prevention (CDC). The signing organizations initiated the letter out of deep concern that CDC is currently under funded with respect to its responsibilities to protect our nation from today's public health threats. Last year, more than 500 organizations signed on to a very similar letter.

The letter to support CDC funding was sent to members of the Appropriations Committee in Mid-May. The letter can be viewed here (PDF).

On the Move

ATHN Board member, Dr. Keith Hoots will join the National Heart Lung and Blood Institute (NHLBI) in January as Director of the Division of Blood Diseases and Resources. Dr. Hoots is currently Professor of Pediatrics and Division Head, Pediatric Hematology, The University of Texas Medical School at Houston; Section Head, Pediatric Hematology, The University of Texas M.D. Anderson Cancer Center; and Medical Director, Gulf State Hemophilia and Thrombophilia Treatment Center. Dr. Hoots is a past president of the Hemophilia Research Society of North America.

Focus On

Disaster Preparedness — ATHNready

HTCs and their patients can take comfort in knowing that their data is well on the way toward being protected during and after a disaster. The disaster preparedness program, supported by cooperative agreement number U27DD000319 from the CDC, addresses disaster preparedness on two fronts: first, it helps the HTC to protect patient data collected using Lab Tracker and to restore the web–based infrastructure in the event of a disaster; and secondly, it leverages the infrastructure in order that patients and providers would have ready access to accurate medical and treatment history in the event of a disaster. This combined approach, which could help reduce morbidity, mortality and cost, is aligned with ATHN's strategy to ensure data safety, back up and portability.

Earlier this spring, ATHN completed a draft of ATHNready, a national disaster preparedness plan, and is preparing to pilot test it this summer. <read more>

ATHN Hires Director of Operations

Crystal Watson, known to many in the hemophilia community, joins ATHN as its first Director of Operations. Bringing experience from both government and the HTC network, Crystal will assume responsibility for implementing the infrastructure plan approved by the ATHN Board in February 2008. This includes alpha and beta testing of Lab Tracker (web), system refinements and the graduated rollout to existing and new users. Training and support of local data managers in close partnership with the twelve regions and government partners is a top priority. Crystal has been a champion for electronic standardized data collection through Lab Tracker while at the Hemophilia of Georgia, the CDC Division of Blood Disorders, and most recently at CDC's National Center for Public Health Informatics. We look forward to her dedication, energy and enthusiasm for getting things done. Crystal will report to Diane Aschman, ATHN President and CEO. She can be reached at cwatson@athn.org.

SEE YOU SOON!

Mark your calendars for these upcoming ATHN events, meetings and presentations:

Join us! ATHN Data Summit 2008
07-31-2008 to 08-01-2008

Region V-East Annual Meeting
09-04-2008 to 09-05-2008

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