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.
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ATHN Data Summit – Progress Report |
September, 2014 |
Various presenters including D. Aschman (total), A. Shapiro MD (rare disorders); M. Rajpurkar MD (thrombosis) |
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ATHN Research Report/Brief |
September, 2014 |
Report to ATHN Affiliates and supporters; Posted on athn.org October 2015 |
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ATHN Quality Metrics |
September, 2014 |
Reported to ATHN Affiliates at a national, regional and HTC level |
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ATHN Research Report/Brief |
December, 2014 |
Report to ATHN Affiliates and supporters; Posted on athn.org February 2015 |
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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 |
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ATHN 3 - Radionuclide Synovectomy Study |
December, 2014 - current |
Various analyses for multicenter center study |
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ATHN Research Report/Brief |
March, 2015 |
Report to ATHN Affiliates and supporters; Posted on athn.org June 2015 |
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PCORI Grant Application |
March, 2015 |
Query from C. Walsh MD related to hepatitis cases to substantiate disease prevalence in the hemophilia population May 2015 |
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ATHN Research Report/Brief |
June, 2015 |
Report to ATHN Affiliates and supporters; Posted on athn.org August 2015 |
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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 |
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FDA PPTA Meeting |
June, 2015 |
Summary of nationwide data presented by B. Konkle MD on September 15 2015 |
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ATHN Research Report/Brief |
September, 2015 |
Report to ATHN Affiliates and supporters; Posted on athn.org October. 2015 |
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ATHN Quality Metrics |
September, 2015 |
Reported to ATHN Affiliates at a national and regional level; HTC level reports separately emailed |
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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.
