About Clot Connect

About Clot Connect

Posted |

March is DVT Awareness Month.  Meet the people who bring you Clot Connect's educational resources and learn how you can help. 

Clot Connect, www.clotconnect.org, is an education outreach program at the University of North Carolina at Chapel Hill (UNC) Hemophilia and Thrombosis Center which serves as a comprehensive clearinghouse for reliable, clinically-relevant information on the prevention, diagnosis and treatment of blood clots called deep vein thrombosis (DVT) and pulmonary embolism (PE). It is the only education program of its kind in the U.S.

Clot Connect currently reaches over 30,000 people each month with educational resources, and it is growing.  Clot Connect is supported by 1 staff position and a team of dedicated volunteers. The program is entirely supported via grants and donations. Learn how you can help the Clot Connect program continue services.

We’d like for you to meet some of the people passionate about reaching patients and healthcare professionals with life-saving and life-changing blood clot education. 

 Beth Waldron

Beth Waldron, MA

Beth Waldron is the Clot Connect Program Director, and is a member of the UNC Hemophilia and Thrombosis Center and McAllister Heart Institute. She directs Clot Connect’s day-to-day operations and is responsible for all aspects of program management and audience engagement, including patient and provider communications, education material development, fundraising, media relations, social media and website development. A national advocate for venous thromboembolism and patient engagement, she serves on a number of federal workgroups striving to improve patient care, including: US Health and Human Services Partnership for Patients Speaker Bureau, US Health and Human Services PfP committee on Patient and Family Engagement, National Priorities Partnership-National Quality Forum, and the National Quality Forum Affinity Group on Patient and Family Engagement. 

From Beth: 

"My professional work in blood clot education stems from a very personal health crisis.  In 2003 at the age of 34, I experienced deep vein thrombosis (DVT) and pulmonary embolism (PE). My clots were initially not diagnosed correctly. Neither I nor my healthcare provider recognized my symptoms as due to a blood clot. The leg pain associated with my DVT was initially attributed to a pulled muscle. The chest pain and shortness of breath associated with my PE were initially diagnosed as a respiratory infection for which I was prescribed antibiotics. Only after a second near-fatal PE episode were the correct diagnostic tests performed and an accurate DVT and PE diagnosis made.

After my clotting episode, I learned that I have a thrombophilia (clotting disorder).  I am homozygous for the Factor V Leiden genetic mutation, which greatly increased my clot risk.  Today, I remain on long-term anticoagulation (blood thinners).

As a result of my personal experience with blood clots, I am now heavily involved professionally in promoting greater education for both patients and healthcare professionals. It is my personal belief that it takes an informed patient and an informed healthcare professional working together for the most optimal health outcome.   This is the cornerstone of the work I do now for Clot Connect, connecting patients and healthcare professionals to reliable information on the diagnosis, treatment and prevention of blood clots (DVT and PE)."

 

Stephan Moll
Stephan Moll, MD

Stephan Moll, MD provides medical direction and content for Clot Connect and is a faculty member in the University of North Carolina Department of Medicine, Division of Hematology-Oncology in the rank of Professor of Medicine. He is a member of the UNC Hemophilia and Thrombosis Center and the McAllister Heart Institute. His main field of clinical, research and educational activity is coagulation, specifically thrombosis, thrombophilia, and anticoagulation. He was the principal investigator at UNC of the 5 year CDC grant that enabled the creation of UNC’s Clot Connect information program in 2010.  From 1999 to 2006 he was involved in web-based patient education by writing for the information website www.fvleiden.org; he was a co-founder in 2003 and a member of the volunteer board of directors from 2003 to 2006 of the national non-profit patient organization NBCA (National Blood Clot Alliance; www.stoptheclot.org), and from 2006-2008 the first medical director of NBCA’s Medical and Scientific Advisory Board. 

From Dr. Moll: 

"I want to help provide accurate, clinically relevant, and evidence-based medical information to patients, so that they are empowered to understand their clotting problems and the management thereof. I believe that a better informed and educated patient feels more in control of his/her disorder and may have better health outcomes. In addition, I want to help health care professionals who look after patients with blood clots to be optimally informed, be able to find the clinically relevant information they need to optimally manage their patients, and to stay up-to-date. I have pursued these goals over the years through my involvement in patient education activities and organizations (www.fvleiden.org at first, then the National Blood Clot Alliance, now Clot Connect), as well as health care professional education events and organizations.

I helped found Clot Connect because I saw a need in the U.S. for an education forum that provides clinically relevant, academically solid (evidence-based), pharmaceutical industry-independent information to patients and health care professionals. As a comprehensive, yet nimble and fast-reacting program, Clot Connect is a clearinghouse for such information. The success (the steadily increasing number of patients and health care professionals utilizing Clot Connect) and positive feedback on the program confirms to us that the Clot Connect information model is a good one and addresses a need.

The ongoing challenge for Clot Connect is this: many people want information and education, yet few have an awareness that creating, maintaining and letting grow such an information resource costs money. In this age of endless free internet resources (whatever the quality), availability of information is often viewed as something self-understood.  My hope is that patients and families and health care professionals appreciative of solid information, will support this information program. I In addition I hope that support from philanthropically-minded individuals, companies, and foundations will lead to longevity of the Clot Connect program.  

We desire to provide patients and health care professionals with a free, clinically relevant information resource.   The need for such a program clearly is there."