ATHN is proud to announce that 24 HTCs are the recipients of the ATHNdata.quality.counts funding for data management. Over $490,000 in awards will support HTCs to expand their capacity. Funded projects include innovative strategies for regional data collection, such as Weill Medical College coordinating centralized training and shared data collection across 5 HTCs in Region II; smaller collaborations like the one between the Hemophilia Clinic of the West Michigan Cancer Center and the Pediatric Center at Bronson; projects to move toward complete core data by HTCs both large and small (e.g., University of Miami and Backus Children’s Hospital); and projects that emphasize data quality, such as the inclusion of a data audit component by Vanderbilt University and a quality assessment by Yale University.

ATHN recognizes that data quality does count and is working to advance complete and accurate data collection by HTCs in a standardized electronic format. ATHNdata.quality.counts is providing support and funding for ATHN Affiliate HTCs across the country to <read more>

ATHN Affiliates

ATHN Data Summit ‘08

Presentations and pictures from Data Summit '08 are available online! This past summer’s first annual ATHN Data Summit, held in Chicago from July 31^st through August 1^st, set a precedent for success with more than 135 physicians, nurses, licensed social workers, data managers and government collaborators in attendance. Based on the evaluations, 49 out of 50 attendees would recommend the ATHN Data Summit to their colleagues.

Attendees were given updates on ATHN’s activities and major initiatives. The ATHNdataset and the emergency preparedness program – ATHNready – energized the group. <read more>

ATHN Data Summit ‘09

Mark your calendar for the ‘09 Data Summit, July 30 & 31 in Chicago, IL.

ATHN Affiliate Update

The ATHN Affiliate program continues to grow. To date, 86 HTCs have signed on as ATHN Affiliates, representing a cross section of the HTC community, including academic research centers, large centers and small ones, Lab Tracker™ users and non-users, those affiliated with 340B pharmacy programs and those without. Click here to view a complete listing of ATHN Affiliates.

From The Board Room

CDC Liaison to the ATHN Board Honored by NHF

Internationally recognized pediatric hematologist Dr. Roshni Kulkarni, has been given National Hemophilia Foundation’s (NHF) Lifetime Achievement award for her lifesaving work and advocacy in treating bleeding and clotting disorders. Dr. Kulkarni, a professor in the College of Human Medicine’s Department of Pediatrics and Human Development at Michigan State University and the CDC Liaison to the ATHN Board of Directors, was honored recently at the NHF’s annual meeting in Denver. <read more>

Board 2009

The New Year will witness a transition in the leadership of ATHN’s Board of Directors. In January, Thomas Abshire, M.D., Director of the Emory University Comprehensive Hemophilia Program and Professor of Pediatrics at Emory University School of Medicine in Atlanta, GA, will become Board Chair, replacing outgoing Board Chair Amy Shapiro, M.D., Medical Director of the Indiana Hemophilia and Thrombosis Center in Indianapolis, IN. <read more>

Focus On

ATHNready – A Disaster Preparedness Program

Disasters, such as hurricanes Katrina and Rita, can disrupt the patients’ access to care, destroy local systems and underline gaps in disaster preparedness. ATHNready provides resources to help you and your patients to get ready. Drawing on best practices of centers across the country, ATHN has developed a “ready-to-go” article to raise awareness through your HTC or chapter newsletter, a Care Continuity Plan template to help your HTC build its own plan, a wallet-sized flash drive card with core medical information for your patients and a web-based interactive HTC-finder complete with driving instructions. <read more>

Research Spotlight

Projects that help to improve care and preserve access to high quality care are our priority. Currently ATHN’s three current projects are actively recruiting sites and patients. Each is highlighted below and we welcome your involvement.

Plasminogen Deficiency Registry – Powered by ATHN

The plasminogen deficiency registry is up, running and ready to register your patients with plasminogen deficiency.The registry will begin to determine the approximate number and type of patients in the U.S. and Canada who present with signs and symptoms of this disorder. Click here to register your patients.  PlasminogenRegistry.org.

Plasminogen is a coagulation enzyme, which, when deficient, leads to a variety of conditions that can affect multiple sites, including the eye, gingiva, cervix, bronchial tree, renal collecting system, ear and sinuses. Because the prevalence of plasminogen deficiency has been poorly documented, researchers, Rakesh Mehta, M.D., Assistant Professor of Clinical Medicine, Section of Hematology/Oncology at the Indiana University School of Medicine and Amy D. Shapiro, M.D., Medical Director of the Indiana Hemophilia and Thrombosis Center in Indianapolis have developed a plasminogen deficiency registry.<read more>

Severe Factor X Deficiency Study – Patients Needed

Who are the sites that treat severe factor X deficiency patients in the U.S.? That’s the question ATHN attempted to answer for Bio Products Laboratory as they prepare for an international trial to investigate the pharmacokinetics, safety and efficacy of a high purity factor X concentrate in patients with severe factor X deficiency. The feasibility study conducted by ATHN is complete, but the need to identify sites with patients that meet the study criteria continues. <read more>

Von Willebrand Disease

The von Willebrand Disease Prophylaxis Network is actively seeking participation from treatment centers. The ATHN project review panel has endorsed the study and encourages investigators that might be interested to contact the Network for more information. (Thomas.Abshire@emory.edu; Erik.Berntorp@med.lu.se; SDonfield@rhoworld.com ). The following article by Thomas C. Abshire, M.D., Director, Emory University Comprehensive Hemophilia Program Professor of Pediatrics at Emory University School of Medicine in Atlanta, GA, describes a new study being conducted to improve prophylactic treatment regimens for von Willebrand Disease, a common hereditary bleeding disorder. After reading the article, consider becoming involved in this ground-breaking effort. <read more>

Coming Soon – HTC Characteristics Study

ATHN will be powering a survey of HTCs being conducted by the Socio-economics Outcomes Working Group, a subgroup of the Coordinating Committee. Watch your email for details! 

HTC Spotlight

WebTracker Migration

HTC staff who attended the National Hemophilia Foundation’s (NHF) annual meeting in Denver this November were treated to a preview of the new web-based version of Lab Tracker™. In addition to learning what they need to do to prepare for migration to this new platform, HTC staff, representing each of the 12 hemophilia regions as well as a range of disciplines, also participated in the ATHN-sponsored training on the new software. Learn what four steps you can take now to get ready. <read more>

Reaching Out

Community Liaison Group Meeting

The second annual meeting of The Community Liaison Group took place on October 29, 2008, in Atlanta. We were pleased to be able to bring members of the group up to date on the state of ATHN, tour the mid-tier data center at Centers for Disease Control and Prevention (CDC) where ATHN proposes to store the national database and the ATHNdataset, and to get feedback from the group on ATHN’s strategy for patient authorization and disaster preparedness. <read more>

Industry Liaison Group Meeting

To carry out its mission and vision, ATHN relies on the strength of its collaborative partnerships both within the hemophilia and thrombosis patient community and within a range of related industries that serve this community. As part of its strategic plan, ATHN identified data analysis and research that facilitates knowledge creation and advocacy as a key strategic opportunity. Toward that end, ATHN has expanded its collaborative relationships with pharmaceutical, biotech and medical product companies in the field by creating an Industry Liaison Group. <read more>

Call for ATHN Committee Volunteers for 2009

Looking for a way to give back to the hemophilia and thrombosis community? Consider becoming and ATHN volunteer! ATHN is currently recruiting volunteers to participate on committees in 2009. Becoming an ATHN volunteer is a great way to contribute more actively in support of ATHN’s mission, expand your network of colleagues and perhaps even develop new professional skills. <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. Some confusion exists over the following two words, simple definitions help:

Dataset: A subset of data extracted from a database.

SEE YOU SOON!

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

Join us! ATHN Data Summit '09 July 30 & 31 in Chicago, IL.

Meet us! 2nd Annual EAHAD Congress, Munich 02-26-2009 to 02-27-2009

more >

Extra!

Patient Education Resources Now Available

As part of ATHN’s continuing efforts to advance and improve the care of individuals affected by bleeding and thrombotic disorders, we have created a new Patient Resources page on our website designed to provide educational information for your patients and families about ATHN partnerships and programs, such as ATHN’s partnership with HTCs across the country and ATHN’s new program to help families be prepared for disasters and emergencies. You’ll even find an interactive map of HTCs across the country that patients can use to quickly and easily identify a comprehensive HTC anywhere in the U.S. should they find themselves displaced by a disaster or relocated for other reasons.

We invite you to browse through the patient education materials provided on this page to learn more about ATHN and how ATHN can help you. (http://www.athn.org/patients)