The American Society of Hematology is looking for a few good deep vein thrombosis patients to provide their input on a project. The following information was copied and pasted from the information they provided. If interested, please contact Dr. Webb at the link in the information below. Thanks. Henry I. Bussey, Pharm.D.
Patient Volunteers Needed: ASH Clinical Practice Guidelines on Venous Thromboembolism
The American Society of Hematology (ASH) invites non-physician volunteers to serve as patient representatives on panels that will develop new clinical practice guidelines about the diagnosis and treatment of venous thromboembolism (VTE). VTE occurs when a blood clot forms in one of the deep veins of the body (called deep vein thrombosis) and travels to the lungs, where it blocks blood flow to the lung tissue (called pulmonary embolism). A blood clot can also travel to the brain, causing stroke.
Clinical guidelines review available evidence and provide recommendations to physicians about how to diagnose or treat a medical condition. ASH has formed ten guideline panels to examine ten different aspects of VTE, including heparin-induced thrombocytopenia (HIT) and thrombophilia. Each guideline panel includes clinical experts in VTE as well as individuals who are expert in how to review scientific evidence.
By including individuals on these guideline panels who have personally experienced VTE or who have experienced taking care of someone with VTE, ASH aims to ensure that the panels give attention to the perspective of patients. Individuals who volunteer for this project will have opportunity to make a valuable contribution to the guidelines. They will be included in discussions about evidence, and they will participate in decision-making about recommendations.
If you would like to participate or have questions about this opportunity, please contact Starr Webb, MPH, at firstname.lastname@example.org. Preference will be given to those who contact ASH by July 15, 2015. Volunteers will continue to be considered until July 24th.
Is this a Clinical Trial?
No, there are no medications or devices involved. Volunteers for this project will review written summaries of evidence and participate in making written recommendations about VTE.
How much of a time commitment?
The project is expected to begin by August 2015 and conclude by December 2016, and most work will be done by conference calls. There will be one 2-day in-person meeting, within the United States, at a location to be decided, but likely in Washington, DC. Your travel expenses will be covered by ASH.
Is the position paid?
Participating as a member of the panel is not paid. However, you will be reimbursed for any travel costs associated with your participation.
Attention Clinicians & Scientists: The 15th International Congress on Antiphospholipid Antibody Syndrome is Coming
Henry I. Bussey, Pharm.D.
ClotCare, as one of the partners in the ISTH World Thrombosis Day (WTD) initiative, was contacted by the office of Dr Doruk Erkan regarding activities of two other WTD partners. Dr. Erkan is a rheumatologist with special interests in Antiphospholipid Antibody Syndrome (APS). Dr. Erkan also is the co-chair of an International Anti-Phospholipid Antibody Syndrome clinical research network (www.apsaction.org) and the Organization Committee Chair of the 15thInternational Congress on Antiphospholipid Antibodies (www.apsistanbul2016.org).
If you are interested in attending the 15th International Congress on Antiphospholipid Antibodies, it will take place in Istanbul, Turkey (September 21-24, 2016). More information on this meeting is available at http://www.apsistanbul2016.org/userfiles/files/APS-flyer.pdf
Henry I. Bussey, Pharm.D.
Performing “toe raises” or calf flexing exercises is one method that has long been recommended as a way to promote blood flow in the legs in order to reduce the risk of developing blood clots in the legs (deep vein thrombosis or DVT) while on long flights. More recently some have voiced concerns about a similar risk for those of us who sit for long periods of time at our computers. To be honest, I try to do calf flexor exercises when working at my computer; but if I’m working intently, it simply is hard to remember to do so. An individual in the United Kingdom recently designed a sort of shoe that may help with this issue. The shoe has a curved bottom to facilitate such calf flexor exercises. You can learn more about these devices at http://www.calf-flexors.com/index.html I’ve been told that a large, international pharmacy chain is interested in bringing these devices to market in the U.S. While these devices would seem to be a good way to promote more exercise to increase circulation while sitting for long periods of time, I must admit that I am not aware of scientific data to prove this hypothesis or to confirm that use of the devices actually has the desired effect. But the concept certainly seems logical.
from Henry I. Bussey, Pharm.D.
What largely preventable condition kills more people each year in Europe and the U.S. than breast cancer, prostate cancer, motor vehicle accidents, and AIDS COMBINED? According to the World Thrombosis Day (WTD) group of the International Society of Thrombosis and Hemostasis, the condition is venous thrombolism (VTE). A new international study by the WTD group, however, reveals that approximately only half of those surveyed were aware of VTE, which includes deep vein thrombosis (DVT or blood clots in the legs) and pulmonary embolism (PE or blood clots in the lungs). And even fewer were able to identify risk factors for VTE, the usual symptoms, or that most VTEs can be prevented. Clearly there is a major international need to increase awareness of the risks of VTE and what can be done to prevent these potentially catastrophic and deadly events.
The entire study results are available online at http://onlinelibrary.wiley.com/doi/10.1111/jth.13031/abstract
Stay tuned for more information as World Thrombosis Day (Oct. 13th) approaches.
A group at Johns Hopkins Medical Center has been working (with support from ClotCare) to develop and promote ways to increase patient awareness of issues related to venous thrombosis (VTE). That group just provided ClotCare with the following message which also includes a link to a new patient-focused video.
In 2013, we were awarded a contract by the Patient-Centered Outcomes Research Institute (PCORI) with the goal of increasing patient understanding and improving patient-nurse communication about the harm of venous thromboembolism (VTE) and the benefits of preventive treatment. In partial fulfilment of this goal, we have developed a patient education video. The video was developed with significant input from patients and stakeholder organizations including Clot Care, North American Thrombosis Forum (NATF), National Blood Clot Alliance (NBCA) and the Johns Hopkins Hospital Patient and Family Advisory Council (JHH PFAC). Input was obtained through the Delphi Survey, multiple focus groups including a meeting with the JHH PFAC, and from participants at our 2015 VTE Symposium. Now that the video has been fully developed and launched, we would like it to be made widely available. It is already posted on our newly developed website, YouTube, Twitter and Facebook and has received an impressive response so far. To further enhance the reach of this important educational tool, we are requesting your help in disseminating it to your networks via your social media pages and your organizations’ websites. You can access the video at http://bit.ly/bloodclots.
Thank you and we look forward to your continuing partnership. The Johns Hopkins VTE Collaborative Elliott R. Haut MD PhD FACS, Michael B. Streiff MD FACP, Peggy S. Kraus PharmD CACP, Brandyn D. Lau MPH CPH, Deborah B. Hobson BSN, Kenneth Shermock PharmD PhD, Norma E. Farrow BA, Dauryne L. Shaffer MSN RN CCRN, Victor O. Popoola MBBS MPH Sc.M
Join the Anticoagulation Forum for the 3rd Anticoagulation Boot Camp, July 23rd and 24th, 2015 in Boston.
This compact 2-day conference offers comprehensive learning for those new to anticoagulation or a refresher on updates on the changing practice of anticoagulation.
The AC Forum expert faculty will provide an interactive setting in a small group learning model with plenty of time for Q&A and dynamic discussion. Nursing and pharmacy CE credits will be provided.
Prior programs have sold out so register soon to secure your spot. Visit http://www.acforumbootcamp.org for more information or to register.
by Henry I. Bussey, Pharm.D.
The National Heart Lung and Blood Institute (NHLBI) of the National Institutes of Health has invited submissions of study ideas. I submitted a suggestion that warfarin managed with INR self testing and online monitoring and management should be compared with one of the new oral anticoagulants in patients with atrial fibrillation. Visitors to the NHLBI at http://nhlbistrategicvisioning.ideascale.com/ can view the submissions. If you click on “Browse Submissions” that will take you to a page where you can enter “warfarin” to search the submissions and that will bring up my submission and one other. Please take a look at what I submitted and see if you would like to vote for the submission and/or add a comment. Thank you.