TWO Research Opportunities: One Drop 2024
ATHN 10 & ATHN Transcends
Women’s Ultra-Sound Project (WUP)
The Details
During the One Drop event we will schedule time for blood draws, a bleeding assessment survey and completion of forms to participate in these ATHN projects for those with a documented ultra-rare bleeding disorder. Please read on for more information about how the research and results are produced.
Time Requirement:
GT Patients -30 minutes
Ultra Rare Factor and Platelet Disorders -15-20 minutes
THERE IS NO COST TO PARTICIPATE IN THIS PROJECT.
CHES is partnering with ATHN under the direction of Dr. Tami Singleton, and the Tampa St. Joseph’s Hemophilia Treatment Center under the direction of Dr. Erin Cockrell to bring blood draws to One Drop to be included in the ATHN dataset for attendees willing to participate at the event.
About the study
CHES is a dedicated supporter of opportunities to bring research to our programs. We know first-hand how challenging it can be to access studies within your local hemophilia treatment center (HTC) if you utilize one.
The American Thrombosis and Hemostasis Network (ATHN) https://athn.org/ offers several national projects by partnering with HTC’s across the US for the purpose of genetic data collection that leads to better treatment outcomes. Two current projects include ATHN 10 and ATHN Transcends for the purpose of better understanding of ultra-rare disorders.
https://athn.org/what-we-do/national-projects/athn-projects-and-research-studies.html
-Genetic laboratory testing will be conducted by Dr. Diane Nugent’s Hemophilia Advanced Diagnostic Laboratory in Orange County, CA. Dr. Nugent is a world-renowned researcher and expert in ultra rare bleeding conditions. In 2017-2019, she conducted these studies at our ultra-rare conferences.
https://care.choc.org/dr-diane-nugent-profiled-leader-hematology/
-Your genetic results will be provided to the healthcare professional noted on your intake forms, not directly to you.
-It may take as long as 9-12 months for you to receive your results
-CHES will NOT have access to your results
WHY THIS IS IMPORTANT
Research is vitally important to those with an ultra-rare condition or for women with bleeding disorders as information is scarce. Additional research will accomplish the goal so many of you are looking for and what CHES continues to advocate for: accurate diagnosis, appropriate care and treatment. It is the only way we will be able to educate healthcare providers and product manufacturers of the ongoing needs of the ultra-rare and women’s communities. We hear ALL the time; we need more data and data is key. We know that genetic testing yields the best results for better treatment outcomes for those affected by ultra-rare bleeding conditions.
2. Women’s Ultra-Sound Project (WUP)
Time Requirement:
45 minutes
CHES is also offering an opportunity for all women ages 18-50 with a diagnosed factor deficiency to participate in the Women’s Ultra-Sound Project under the direction of Drs. Joanna Davis and Kelli Fraga DPT. The WUP study first offered at our LadyBugs National Women’s program in 2019 provides the opportunity for muscular skeletal ultrasound of elbows, ankles and knees for the purpose of gaining knowledge about potential joint arthropathy in women who carry or are diagnosed with a factor deficiency.
Results will be shared with you at the conference - CHES will have NO access to your results
Why this is important
There is currently no national study to access women’s joints by ultrasound for potential arthropathy. We have some clinical studies, but not enough data that may indicate that women and those who carry factor deficiencies have more joint damage than women who are not affected or carry a factor deficiency. Again, data is KEY! If we are to continue to direct change for the diagnosis, appropriate care and treatment for women, we must have the data to back up what we suspect and know. Women can and do bleed, women are often marginalized by health care professionals and must fight for the same access to treatment as their blood brothers. For you, a lived experience expert with an ultra-rare bleeding disorder, this is even more important as your symptoms are frequently compared to those with severe hemophilia A/B and often overlooked or deemed not as serious.