Category: News

A report on Clot Connect outreach: our first three years

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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 3 years and this growth is highlighted in a special 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 423,000 people from over 190 countries have been connected to information on the diagnosis, treatment and prevention of deep vein thrombosis and pulmonary embolism through ClotConnect.org.  (page 7)
  • The clotconnect.org website receives between 20,000-30,000 unique individual visitors each month. (page 7)
  • The 'networked community' continues to grow.  1,000+ persons receive the program’s email newsletter each month,  ~1200 persons have opted to receive blog updates by email, ~1000 linked via social media. (page 7) 
  • The program has increasingly engaged in national clot education initiatives (page 5)
  • Clot Connect is entirely supported through grants and donations.  The program is currently in need of sustainable funding to continue the provision of services. (page 8)

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. Clot Connect presents a unique opportunity to address an unmet need.

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 two and half years, but realize there is far more to do.  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.

 

Clot Connect's  Vision

To become the premier resource for information on venous thrombosis, thrombophilia and anticoagulation by addressing what patients and health care professionals have on their minds and want to know about thrombosis, thrombophilia and anticoagulation.

Public television show features Clot Connect

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PBS episode

Clot Connect is featured as an educational resource in a national public television program called ‘Healthy Bodies, Healthy Minds’. 

Clot Connect’s Medical Director Dr. Stephan Moll and  Program Director Beth Waldron appear in the newly released episode entitled  “Preventing Deep Vein Thrombosis and Pulmonary Embolism: Dangerous Blood Clots”. The episode examines what can be done to prevent DVT and PE. It also explores how physicians and public health experts are finding ways to help people lower their risk for blood clots. 

The program features the personal story of a local patient, Roger Callanan, who experienced DVT and PE.  The episode also includes Leslie Mason, a Quality & Organizational Excellence Leader in UNC's Performance Improvement and Patient Safety office, who is working to reduce hospital acquired blood clots.

The entire episode can be watched online at the production company's website, at this link.

A PBS local listings schedule of when the episode airs can be found, here.  

Meet the people behind Clot Connect

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Clot Connect logo Clot Connect, www.clotconnect.org, is an education outreach program at the University of North Carolina at Chapel Hill (UNC) 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.  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 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 Associate Professor. 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 has better health outcomes and feels more in control of his/her disorder. In addition, I want health care professionals who look after patients with blood clots to be optimally informed, be able to find the clinically relevant information, and to stay up-to-date. These goals I have pursued 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 that there is 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. 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) confirms to us that this information model is a good one and addresses a need.

The current challenge facing Clot Connect is: many want and need information and education, yet few are able or willing to pay for it.  We desire to provide patients and health care professionals with a free, clinically relevant information resource.  However, without funding, information cannot be provided, let alone be expanded. That is the main struggle we face. The need for such a program clearly is there."

 

 Tom Hogan

Tom Hogan

Tom Hogan, is the Head Online Patient Support Group Moderator for ClotConnect.Org.  Tom has a long history of patient advocacy and volunteers his time supporting blood clot patients in numerous online forums and through nonprofit organizations.

From Tom:

"I had served 10 years in the Navy's Submarine Community when I had my first unexplained DVT (1992). For a week the Naval Hospital thought I had a pulled or torn muscle from a previous Mountain Bike Race. I was prescribed ibuprofen and told if it got worse to come back. One morning I woke up and the leg was swollen pretty badly and I could not stand to bear weight on it. It was then that the hospital realized it wasn't a typical sports injury. They performed a venogram which confirmed I had a series of clots throughout my leg. While hospitalized they also had concerns about a high resting heart rate so ordered a lung scan which later confirmed I had additionally suffered a pulmonary embolism.

Six months of Coumadin therapy and I was returned to full duty. Then, in 1995, I suffered another DVT (opposite leg). The hospital was quick to diagnose this one due to my previous medical history.

In 1996 the Navy was potentially going to medically discharge me. I had asked to try to find a reason why I kept developing blood clots before any decisions were made. In January of 1996 I was diagnosed with Factor V Leiden (homozygous) clotting disorder and was also found to have elevated homoysteine levels.

Trying to stay in the military was an uphill battle. I was the first patient the Navy had seen who was diagnosed with this clotting disorder. Eventually I won and was able to remain in the Navy until I retired in 2002 after 20 years of service. In 2003, I was asked to become a member of a Steering Committee working with the Centers for Disease Control and Prevention (CDC) that was addressing the needs of the blood clot community, and was a cofounder of the National Blood Clot Alliance and worked with that organization for over eight years. This brings me to the present where I am now the Head Patient Support Forum Moderator for Clot Connect.

I encourage you all to share your stories, ask questions, and share. The patient community and medical community can learn from each other, and patient forums are one of the best ways to do this. As Clot Connect evolves, we hope that our patient support forum will provide some of the answers and support people are looking for."

Visit the patient support forum.  


Volunteers Needed

Patients:  

  • Lend your experience:  Support other patients in our online support forum
  • Fundraise: Clot Connect's educational outreach is funded through donations and grants; the program currently receives no federal, state or university financial support. Please consider supporting Clot Connect's work by by making a tax-deductible financial contribution or by hosting a fundraising event.
  • For more information, contact us.  

Healthcare Professionals:

  • Lend your expertise: Help answer patient questions in our online support forum.
  • Spread knowledge:  Clot Connect welcomes submissions of medical content to its educational blogs, one written for patients, one for healthcare professionals.  Submissions of content should reflect evidence-based clinical approaches, with appropriate medical journal citations included when possible.
  • For more information, contact us

 

Raising awareness and funds

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race car

March is National Blood Clot Awareness Month--Deep Vein Thrombosis (DVT) and Pulmonary Embolism (PE)

For National Blood Clot Awareness Month, NASCAR driver Brian Vickers put forth a challenge.  For every lap he leads during March--in either the Nationwide or Sprint Cup Series--he is going to donate $10 a lap, with a minimum $2,000 donation to Clot Connect.  The Clot Connect logo and website address will be on Vicker’s car during March.  (above is the paint scheme for the March 17 race in Bristol)

Early in the 2010 season, Vickers was diagnosed with blood clots that forced him to miss the remainder of the season.  Vickers worked with physicians at the University of North Carolina at Chapel Hill and Clot Connect who helped him make informed decisions.  

“It was a battle I couldn’t conquer alone,” said Vickers. “UNC Chapel Hill and Clot Connect together were instrumental in providing valuable information that helped me make informative decisions on my treatment plan.”

Vickers has encouraged his friends, partners, and fans to participate in the March fundraising and blood clot awareness challenge.  Individuals and organizations are getting involved by either making a donation, matching Vicker’s donation or pledging some variation, such as $1 a lap. We have also heard from fans who have experienced a blood clot themselves and they express a first-hand appreciation for what the connection to educational information means to them personally. We are deeply honored by the outpouring of community support.

We gratefully acknowledge the generous support of those who have pledged either financial contributions or in-kind services and support for the March campaign:

Brian Vickers
The Jimmie Johnson Foundation
Dollar General
Sprint
The NASCAR Foundation 
Janssen Pharmaceuticals
Joe Gibbs Racing
Michael Waltrip Racing
RK Motors Charlotte

We appreciate the support of Clot Connect and our mission to connect patients and healthcare professionals to accurate information about blood clot prevention, diagnosis and treatment.  Upwards of 600,000 Americans each year are affected by blood clots (deep vein thrombosis and pulmonary embolism) and the need for education of both patients and healthcare professionals is great. Many blood clots and their complications are preventable. Currently around 30,000 persons per month utilize Clot Clonnect's web-based education resources.  Donations enable us to reach more people with life-saving and life-changing educational information.

Thank you!



About Clot Connect

 Clot Connect, www.clotconnect.org, is an education outreach program at the University of North Carolina at Chapel Hill 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 country. 

 Clot Connect's outreach is funded through donations and grants; the program currently receives no federal, state or university financial support. Please consider supporting Clot Connect's work by making a tax-deductible financial contribution.

International Women's Day: Clotting and Women's Health

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Today is International Women's Day.  While blood clots (deep vein thrombosis and pulmonary embolism) affect both men and women, there are unique considerations for women.  

  • Blood clots can be life-threatening during pregnancy and are the leading cause of maternal death in the United States. (ref 1)
  • A woman is at increased risk for developing blood clots during pregnancy and that risk remains elevated for up to six-weeks following childbirth.  Pregnancy increases the risk of a blood clot fivefold, with the risk even higher in the postpartum timeperiod. (2)
  • Post-menopausal women undergoing hormone replacement therapy have a two to four fold increase in the risk for clots. (3)
  • Women with a clotting disorder (thrombophilia) have increased clot risk.  About 8% of the US population is estimated to have a clotting disorder and a clotting disorder is found in upwards of 50% of women who have a blood clot during pregnancy.
  • Women with a clotting disorder experience a higher rate of pregnancy complications including repeated miscarriage or stillbirth.(4)
  • Oral contraceptives increase clot risk.  Some contraceptives carry higher risk than others.   More information on contraceptives and clot risk. (5)

Clot Connect offers information about clotting concerns unique to women:   index of topics and materials related to women's health.

 

REFERENCES

1. 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.

2.Heit JA, Kobbervig CE, James AH, Petterson TM,Bailey KR, Melton LJ, 3rd. Trends in the incidenceof venous thromboembolism during pregnancy or postpartum: a 30-year population-based study. Ann Intern Med 2005;143(10):697-706

3. Surgeon General’s Call to Action to Prevent Deep Vein Thrombosis and Pulmonary Embolism US Department of Health and Human Services 2008

4.  March of Dimes

5. http://www.clotconnect.org/patients/what-do-i-need-to-know/i-m-a-woman-on-contraceptives

March is DVT Awareness Month

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Be Clot Aware
Did you know? 
  • Blood clots (DVT and 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]
  • Blood clots are a leading cause of preventable hospital deaths in the United States. [ii]
  • Blood clots are the leading cause of maternal death in the United States.[iii]
  • One-half of clot 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]

 

What is 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

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

What Causes Blood Clots (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:

Immobility:
· Hospitalization
· 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
· Estrogen and progestin hormone 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)
· Obesity
· Older age
· Cigarette smoking
· Varicose veins 


Tips for Preventing Blood Clots (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.  
  • 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'.

Clot Connect

Clot Connect, www.clotconnect.org, is an outreach program at the University of North Carolina at Chapel Hill which aims to address the need for improved education by serving as a comprehensive clearinghouse for reliable, clinically relevant information on prevention, diagnosis and treatment of blood clots. It is the only education program of its kind in the country.  About 30,000 persons per month utilize the web based education resources and it is growing.

Many blood clots and their complications are preventable.  The goal of education is to reduce morbidity and mortality from blood clots, which translates into:

  1. Fewer DVT and PE.  DVT treatment costs alone are approximately $20,000 per patient with PE costs much higher.[vi]
  2. Fewer readmissions (due to poor anticoagulation management such as bleeds, recurrent clot).  Among patients with a first time venous clot hospitalization, one study found that 25% had a hospital readmission with an average cost of $15,000.[vii]
  3.  Less Emergency Room utilization (due to bleeds from anticoagulation, post-clot pain management)
  4.  Fewer adverse outcomes (such as bleeding, post-thrombotic syndrome, pulmonary hypertension, recurrent clot)

In short, greater clot education can lead to better health care and better patient outcomes, at lower costs.


Additional information

For information on blood clots and how they can be prevented, visit www.ClotConnect.org or download our information sheet at: http://files.www.clotconnect.org/Clot_Basics.pdf

Contact  Beth Waldron
Program Director, Clot Connect
Hemophilia and Thrombosis Center,
University of North Carolina at Chapel Hill
Direct message @ClotConnect on Twitter

 

 

REFERENCES


[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 MGHooper WCCritchley SEOrtel 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

[vi] Mahan et al “Deep vein thrombosis: A  United States cost model for a preventable and costly adverse event” Journal of Thrombosis and Hemostasis 2011; 106: 405-415

[vii] Spyropoulos AC, Lin J. Direct medical costs of venous thromboembolism and subsequent hospital readmission rates: an administrative claims analysis from 30 managed care organizations. J Manag Care Pharm.2007; 13: 475−486.

Updates to education resources

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Medical information affecting clinical practice can change rapidly as new scientific research is published and new treatment therapies are approved. 

 As a clearinghouse for the latest thrombosis and anticoagulation information, the content on the ClotConnect.org website is under constant update. 

 Recent revisions include:

  • Prescription Assistance: Patients who have been prescribed Xarelto (rivaroxaban) and have difficulty affording their medication, may be eligible for prescription assistance through a variety of options, including a discount savings card. Information on Xarelto assistance is available online at this link or by calling  1-888-XARELTO (1-888-927-3586), Monday - Friday, 8:00 AM - 8:00 PM ET.  Prescription drug assistance programs for other drugs can be found on the Clot Connect website, here
  • Aspirin and clot prevention: A November 2012 blog post  on the topic of "Does aspirin prevent VTE" has been revised to reflect newly information learned from recently published studies. The post for patients, available here.  The post forhealthcare professionals here.
  • Ischemic Colitis and thrombophilia:  A July 2012 post has been updated for patients and healthcare professionals to reflect current clinical guidance regarding ischemic colitis and thrombophilia.
  • Paroxysmal nocturnal hemoglobinuria (PNH):   PNH is a serious, but rare, disease that can cause thrombosis.  Links to information on this condition have been added, here.
  • Newly Diagnosed with DVT or PE:  The brochure for patients newly diagnosed with blood clots has been revised to reflect the approval of Xarelto for the treatment of DVT/PE and to clarify the latest guidance on the use of compression stockings to manage post-thrombotic syndrome. The brochure is available on the clotconnect.org website, here. 

Getting involved: Increasing clot awareness

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Corrine

Corinne Guillen is a high school senior from Mebane, North Carolina who chose as her volunteer graduation project to increase awareness of the Factor V Leiden mutation and thrombophilia.  Corinne recently held a bake sale to raise funds for Clot Connect  and make persons in her community more aware of blood clots. Way to go Corinne and thanks for getting involved!

Want to get involved to promote greater blood clot awareness? 

Check out our guide on 'What you can teach others about blood clots'.  The precise number of people affected by deep vein thrombosis (DVT) and pulmonary embolism (PE) is unknown, but estimates by the Centers for Disease Control (CDC) range from 300,000 to 600,000 each year in the United States.  Estimates suggest that 60,000 to 100,000 Americans die of DVT and PE each year.  Many of those deaths are preventable.  Yet, only about six percent of people know what DVT and PE is or how it can be prevented.  By talking about blood clots to your friends, family and community, you can help make a difference like Corinne!

Deep vein thrombosis and pulmonary embolism: Informational handout for newly diagnosed patients now available

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A new comprehensive patient information guide is available as a .pdf on the clotconnect.org website for patients who have been diagnosed with deep vein thrombosis or pulmonary embolism.DVT and PE handout image

The guide covers a wide range of topics including:

  • Blood clot basics:  What is a blood clot? What causes a blood clot? Diagnosis:   Tests and imaging studies
  • Treatment:   Anticoagulants, thrombolytic therapy, IVC filters
  • Preventing complications: Post-thrombotic syndrome, pulmonary hypertension
  • Emotional impact of a blood clot
  • Common questions
  • Anatomical graph of the veins 

 

The guide is available for download at this link.

 

Reproduction:  Health care professionals are encouraged to share this educational resource with their newly diagnosed patients. Permission is granted to reproduce this brochure in its entirely by providing the .pdf to a printer of your choice or by placing the .pdf on your organization’s website.  Health care professionals are also welcome to affix a sticker to the print brochure with their practice’s information, such as ‘This brochure provided by…’  Our goal is to facilitate this important educational information reaching as many newly diagnosed patients as possible.  

Clot Connect Annual Report 2012 is now available

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Clot Connect Annual Report for fiscal year 2012 is now available.  It details the program’s outreach activities of the past year as well as funding, expenditures, audience demographics and future plans. 

Click here to view the report.

Clot Connect Annual Report 2012Highlights of the 2012 report include:

  • The clotconnect.org website receives around 20,000 unique individual visitors each month. (page 7)
  • The 'networked community' continues to grow.  700+ persons receive the program’s email newsletter each month,  ~800 persons have opted to receive blog updates by email, ~600 linked via social media. (page 8) 
  • The program has increasingly engaged in federal activities to promote clot education. (page 6)
  • Site visitors are geographically fairly widely distributed across the United States.  (page 8)
  • The CDC grant which funded Clot Connect's start-up and first two years expired in June. The program is currently seeking alternate long-term sources of funding. (page 9)

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. Clot Connect presents a unique opportunity to address an unmet need.

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 year, but realize there is far more to do.  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.

 

Clot Connect's  Vision

To become the premier resource for information on venous thrombosis, thrombophilia and anticoagulation by addressing what patients and health care professionals have on their minds and want to know about thrombosis, thrombophilia and anticoagulation.