Advancing research with better data through the ATHNdataset.

Hemophilia treatment centers (HTCs) and ATHN are committed to improving the quality of life for people with bleeding and clotting disorders. ATHN is helping the HTCs who are our ATHN Affiliates by building a safe, secure national database—and creating the ATHNdataset—that can be used to support research and ultimately improve care.

The ATHNdataset is a vital community resource—and it's growing. Tens of thousands of patients across the country have already signed up to be part of the ATHNdataset and share their health information, such as the type of bleeding or clotting disorder, response to treatments, genetic information, and more. It is strictly confidential—no personal identifying information is included in the ATHNdataset.

More and more, researchers are collaborating and using the data to:

  • Gain a better understanding of the clinical, social, and economic issues affecting patients and families
  • Understand the development of inhibitors and monitor trends
  • Learn more about the genetics of bleeding and clotting disorders
  • Study the effectiveness of treatments and develop standards of care
  • Closely monitor FDA-approved therapies
  • Inform advocacy, community support, and education

ATHN is pleased to share Research Report Briefs with the community. These reports are a direct result of the dedicated efforts of ATHN-affiliated HTCs and their patients. Thank you for your support and for helping to make our vision a reality.

Projects Using the ATHNdataset

ATHN Data Summit – Progress Report

September, 2014

Various presenters including D. Aschman (total), A. Shapiro MD (rare disorders); M. Rajpurkar MD (thrombosis)

ATHN Research Report/Brief

September, 2014

Report to ATHN Affiliates and supporters; Posted on athn.org October 2015

ATHN Quality Metrics

September, 2014

Reported to ATHN Affiliates at a national, regional and HTC level

ATHN Research Report/Brief

December, 2014

Report to ATHN Affiliates and supporters; Posted on athn.org February 2015

Query:  Inhibitor rates and ITI in hemophilia patients

December, 2014

Provided to C. Walsh inhibitor rates as reported in the Quality metric and research report for Dec. 2014

ATHN 3 - Radionuclide Synovectomy Study

December, 2014 - current

Various analyses for multicenter center study

ATHN Research Report/Brief

March, 2015

Report to ATHN Affiliates and supporters; Posted on athn.org June 2015

PCORI Grant Application

March, 2015

Query from C. Walsh MD related to hepatitis cases to substantiate disease prevalence in the hemophilia population May 2015

ATHN Research Report/Brief

June, 2015

Report to ATHN Affiliates and supporters; Posted on athn.org August 2015

NHF - ATHN Research Report to the Community

June, 2015

Oral report to the patients attending the NHF annual meeting by S. Pipe MD, August 2015

FDA PPTA Meeting

June, 2015

Summary of nationwide data presented by B. Konkle MD on September 15 2015

ATHN Research Report/Brief

September, 2015

Report to ATHN Affiliates and supporters; Posted on athn.org October. 2015

ATHN Quality Metrics

September, 2015

Reported to ATHN Affiliates at a national and regional level; HTC level reports separately emailed

DREAM Award

September, 2015

Award recipient(s) of the DREAM Award will use the data set for their research study as approved by the ATHN-HTRS Dream Award review panel

If you are a researcher interested in using the ATHNdataset for a project, please email support@athn.org.

Participating in the ATHNdataset is easy, confidential, and secure for patients. There are no costs and no special tests involved. To learn more, download our Patient Information brochure.