About Clot Connect

Patient education video now online

Posted |

video image

A recording is now available of the World Thrombosis Day patient education webinar held on October 13.  In this 1 hour video presented by Dr. Stephan Moll, you will learn more about issues faced by patients following diagnosis of deep vein thrombosis (DVT) and pulmonary embolism (PE). Topics include:

  • How blood clots are treated
  • How long to be on blood thinners (anticoagulants)
  • Choices of oral blood thinners and new alternatives available 
  • How to manage long-term complications such as leg swelling and pain, shortness of breath and chest pain.
  • How to minimize the risk for future clots.

The video can be found at: http://acforum.org/webinars_recent.htm

This webinar was a joint activity of Clot Connect, Anticoagulation Forum and National Blood Clot Alliance in recognition of  World Thrombosis Day.

World Thrombosis Day is October 13

Posted |

WTD image

Monday October 13, 2014 is the international observance of World Thrombosis Day (WTD). World Thrombosis Day  represents a collective drive to increase awareness and action through educational activities for the public and health professionals. Over 175 organizations worldwide will be participating in 2014 World Thrombosis Day.

What is thrombosis? Thrombosis refers to a blood clot that forms in an artery or vein. It is the one disorder that causes the world’s top three cardiovascular killers: heart attack, stroke and venous thromboembolism (VTE) – a blood clot mostly in the leg or lungs.  While most people are aware of heart attack and stroke, fewer people know about VTE. That’s why VTE is the focus for the 2014 World Thrombosis Day.  


Together, deep vein thrombosis (DVT) and pulmonary embolism (PE) are known as venous thromboembolism (VTE)

Patient education event

On October 13, 2014 at 1:00PM EST, the University of North Carolina at Chapel Hill’s Clot Connect education program will join forces with the Anticoagulation Forum and National Blood Clot Alliance to present a one- hour, live webinar for patients dealing with the thrombotic conditions of deep vein thrombosis (DVT) and pulmonary embolism (PE). The program will be moderated by Dr. Stephan Moll, Professor in the Department of Medicine and Division of Hematology-Oncology at the University of North Carolina at Chapel Hill and Medical Director of Clot Connect. Patients and their providers may log on, at no cost, to participate in this educational program to help them navigate the often confusing world of thrombosis treatment, management of long-term complications and anticoagulation therapy. Registration can be found at: https://cc.readytalk.com/r/eftxo3dx88kg&eom 

Stop blood clots.  Get the facts.

Did you know? 

  • Deep vein thrombosis (DVT) and pulmonary embolism (PE) affect upwards of 600,000 Americans each year and cause more deaths each year than the more well-publicized conditions of breast cancer, AIDS,and motor vehicle accidents.[i]
  • DVT/PE are a leading cause of preventable hospital deaths in the United States. [ii]
  • DVT/PE are the leading cause of maternal death in the United States.[iii]
  • One-half of DVT/PE patients will have long-term complications and one-third will have a recurrence within 10 years.[iv]
  • An estimated $10 billion in medical costs in the US each year can be attributed to DVT and PE.[v]

 Learn more: 

A. What is deep vein thrombosis (DVT)?
B. What are the symptoms of DVT?
C. What is pulmonary embolism (PE)?
D. What are the symptoms of PE? 
E. What causes DVT and PE?
F. How can DVT and PE be prevented?
H. I've experienced DVT or PE.  What do I need to know?  
I. What can I do to increase awareness? 


What is deep vein thrombosis (DVT)?

When a clot forms in the deep veins of the body, it is called deep vein thrombosis, often referred to as DVT for short.  DVT occurs most commonly in the leg; although it can occur anywhere in the body, such as the veins in the arm, abdomen, or around the brain.

Symptoms of deep vein thrombosis (DVT):

  • Pain
  • Swelling
  • Discoloration (bluish, purplish or reddish skin color)
  • Warmth
Symptoms may range from mild and barely noticeable to severe. Symptoms may also be subtle and easily confused with other medical conditions, such as a pulled muscle or sprained ankle.   


What is pulmonary embolism (PE)? 

A potentially life-threatening complication of deep vein thrombosis (DVT) is pulmonary embolism, often referred to as PE for short. A PE occurs when a blood clot breaks off, travels through the blood stream and lodges in the lung.

Symptoms of pulmonary embolism (PE):

  • Shortness of breath
  • Chest pain (which may be worse with deep breath)
  • Unexplained cough (may cough up blood)
  • Unexplained rapid heart rate
Symptoms may range from mild and barely noticeable to severe. Symptoms may also be subtle and easily confused with other medical conditions, such as a respiratory infection or onset of asthma.


What Causes DVT and PE?

Blood clots may form when either the flow of blood in a vein slows, damage to a vein occurs, or the blood is more clotable. Many factors can increase a person’s risk for developing a blood clot in a vein. 

Common risk factors for developing a blood clot include:



Being paralyzed
Prolonged sitting

Surgery and Trauma:

Major surgery (especially of the pelvis, abdomen, hip, knee)
Bone fracture or cast
Catheter in a big vein (PICC line, central venous catheter, or port)

Increased estrogens:

Birth control pills, patches, rings
Pregnancy, including up to 6 weeks after giving birth
Hormone replacement therapy

Medical conditions:

Cancer and chemotherapy
Heart failure
Inflammatory disorders (lupus, rheumatoid arthritis, inflammatory bowel disease)
The kidney disorder called nephrotic syndrome

Other risk factors:

Previous blood clot
Family history of clots
Clotting disorder (inherited or acquired)
Older age
Cigarette smoking
Varicose veins


Tips for Preventing DVT and PE

  • Stay active.  Immobility increases the risk of developing clots. If you've been sitting for a long period of time (such as long-distance travel)   stop and take a break to stretch your legs.
  • Maintain an ideal body weight.  Don't smoke. 
  • Know your risk factors for developing a clot (above) and discuss these with your doctor.
  • Know your family medical history.  Make sure your doctor knows about any history of blood clots.
  • If you are hospitalized or planning for surgery, ask your doctor:   ‘What will be done to prevent blood clots?’ You may be given a blood-thinning medication (anticoagulant) or special stockings designed to prevent blood clots.  These blood clot prevention measures are called 'DVT prophylaxis'.
  • If you suspect DVT or PE, don't delay seeking medical attention.  Many complications can be prevented with prompt diagnosis and treatment.  



[i] Nabel, Elizabeth MD (Director, NIH’s National Heart, Lung, and Blood Institute) in the Surgeon General’s Call to Action to Prevent Deep Vein Thrombosis and Pulmonary Embolism US Department of Health and Human Services 2008 p. 5.

[ii] Baglin TP, White K, Charles A. Fatal pulmonary embolism in hospitalized medical patients. J Clin Pathol 1997;50(7):609-10.

[iii] Berg CJ, Atrash HK, Koonin LM, Tucker M. “Pregnancy-related mortality in the United States 1987-1990”. Obstet Gynecol 1996;88(2):161-7 Also see Marik. P.E. and Plante, L.A. “Venous Thromboembolic Disease and Pregnancy”. New England Journal of Medicine, volume 359, number 19, November 6, 2008, pages 2025-2033.

[iv]   Beckman MG, Hooper WC, Critchley SE, Ortel TL. Venous thromboembolism: a public health concern.Am J Prev Med. 2010 Apr;38(4 Suppl):S495-501.

[v] Gross, Scott. CDC “Incidence based cost-estimates require population based incidence data” 2012 http://www.cdc.gov/ncbddd/Grosse/cost-grosse-Thrombosis.pdf

Education webinar for patients with DVT/PE to be part of World Thrombosis Day

Posted |

World Thrombosis Day logo


You're invited!

Join us for a 1-hour live online presentation on Monday, October 13, 2014 at 1 PM EDT to learn more about issues faced by patients following diagnosis of deep vein thrombosis (DVT) and pulmonary embolism (PE).  During this event you will learn:
  • How blood clots are treated
  • How long to be on blood thinners (anticoagulants)
  • Choices of oral blood thinners and new alternatives available 
  • How to manage long-term complications such as leg swelling and pain, shortness of breath and chest pain.
  • How to minimize the risk for future clots.
There will be an opportunity for participants to text in questions during the webinar.  If you would like to submit questions in advance, contact us

Speakers: Clot Connect Medical Director, Dr. Stephan Moll of UNC Chapel Hill. 

Who should attend:  Anyone who has been diagnosed with deep vein thrombosis (DVT) or pulmonary embolism (PE).  While this webinar is designed for patients, health care professionals are welcome to attend as well.   

How to register:  You can register for the webinar at this link

This webinar is a joint Clot Connect, Anticoagulation Forum and National Blood Clot Alliance activity for World Thrombosis Day.  



Clot Connect's Annual Program Report 2014 now available

Posted |
Clot Connect (clotconnect.org) is an outreach initiative housed within the Hemophilia and Thrombosis Center of the University of North Carolina at Chapel Hill which since late 2010 has provided information on the diagnosis, treatment and prevention of deep vein thrombosis and pulmonary embolism.   Clot Connect has evolved rapidly during the past 4 years and this growth is highlighted in a 2014 annual report which details the history and outreach activities of the program.   The report is available, at this link
report image
Highlights of the program report include:
  • Since 2010, over 715,000 people have been connected to information on the diagnosis, treatment and prevention of deep vein thrombosis and pulmonary embolism through ClotConnect.org.  (page 6)
  • The clotconnect.org website receives ~ 90,0000 unique individual visitors each month. (page 6)
  • The 'networked community' continues to grow:  1,680+ persons receive the program’s email newsletter each month,  ~ 1,500 persons have opted to receive blog updates by email, ~ 1,400 linked via social media. (page 7)
  • The program has increasingly engaged in national clot education initiatives. (page 5)
Improving health outcomes requires a multifaceted approach and education--of both patient and health care professional--is a key component in supporting a comprehensive care model. 
For patients, it means empowering them with knowledge about their condition and treatment so they can be active partners in their health care, resulting in better and safer treatment, greater satisfaction and an improved quality of life.
For health care professionals, it means providing them with the information and resources they need to confidently and consistently provide quality care to patients who have experienced venous thromboembolism. 
Clot Connect is pleased with the successes of the past four years, but realize there is far more to do.  Between 300,000 and 600,000 Americans each year are diagnosed with DVT/PE.  Clot Connect presents a unique opportunity to address an unmet need. We look forward to continuing to meet the educational needs of patients and health care professionals.
Clot Connect's Mission
To increase knowledge of venous thrombosis, thrombophilia and anticoagulation by connecting patients and health care professionals to educational and support resources.

Recently published: A Patient's Guide to recovery after DVT or PE

Posted |

A Patient’s Guide to Recovery after Deep Vein Thrombosis or Pulmonary Embolism”, authored by UNC Clot Connect program’s Beth Waldron, MA and Stephan Moll, MD, was recently published in the journal Circulation. 

journal article imageThe three-page handout for patients answers common questions encountered after diagnosis of DVT or PE, such as:

  • How long will I need treatment with an anticoagulant?
  • Which anticoagulant will I receive?
  • How do the oral anticoagulant choices available compare?
  • When will my clot and pain go away?
  • How soon can I be physically active?
  • Is it normal to feel anxious or depressed after a clot?
  • What kind of doctor do I need?

“It takes both an informed patient and health care professional partnering together for the most optimal health outcome”, said Beth Waldron, Clot Connect Program Director. “Patients have many diverse questions following the diagnosis of DVT or PE and I hope this educational handout will facilitate the discussion between a patient and their clinician.”

“I encourage physicians and other health care professionals to utilize this handout with their patients newly diagnosed with deep vein thrombosis or pulmonary embolism” said Dr. Stephan Moll, Clot Connect Medical Director. “Additionally, I encourage them to make their patients aware of the many resources available on clotconnect.org, as well as take advantage of the evidence-based resources we have available for clinicians related to the diagnosis and treatment of venous thromboembolism.  Through the Clot Connect program, we are striving to meet the educational needs of both health care professionals and patients.” 

About Clot Connect

Clot Connect (clotconnect.org) is an education outreach project at the University of North Carolina at Chapel Hill’s Hemophilia and Thrombosis Center.  Clot Connect offers patients and healthcare professionals connection to clinically relevant education resources on venous thromboembolism (deep vein thrombosis and pulmonary embolism), thrombophilia and anticoagulation. Since 2010, over 700,000 people have utilized the program’s online information clearinghouse, clotconnect.org, to gain information on the diagnosis, treatment and prevention of venous thromboembolism.

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."

"Understanding DVT" webinar slides

Posted |

On March 6, 2014 Clot Connect Program Director Beth Waldron presented "Understanding Deep Vein Thrombosis (DVT): What Everyone Needs to Know" as part of the CDC Division of Blood Disorders webinar series on bleeding and clotting disorders. 

Slides from the webinar are available as a .pdf, at this link.

A recording of the webinar will be made available on the CDC Division of Blood Disorders website, at this link

We wish to thank the CDC for the opportunity to educate the public about DVT and for sponsoring this excellent webinar series. 

flyer image

Join us for the webinar "Understanding DVT: What everyone needs to know"

Posted |

Join Clot Connect Program Director and DVT/PE survivor Beth Waldron for an educational  webinar  “Understanding DVT: What everyone needs to know”  hosted by the CDC Division of Blood Disorders.  This important educational event will be held on March 6 at 2PM ET.   For more information:

If you have difficulty viewing the image below, visit http://www.cdc.gov/ncbddd/dvt/documents/vte_savethedate_362014.pdf 

Flyer image