American Registry of Women with Congenital Hemorrhagic Conditions

Communication at the end of the first stage (July 2024)

The Coalition of the Americas, and its Committee of Women with Bleeding Disorders, (MTC) proposes a work that visualizes the reality of women who go through this situation in America in order to develop and generate strategies that improve both their diagnosis and the access to comprehensive treatments.

In order to obtain initial information about the reality of Women with Bleeding Disorders (TCM) in the region, a survey was developed around three axes: Registration – Diagnosis and Specialized Care.
In the first months of 2024, 25 countries in the Americas region that are members of Coa were invited to participate.

• Many countries in the Region managed to join this call. We obtained responses from 76% of the countries, which allows us to start an American database.
  
• North and South America responded in 100% of the countries called, Central America in 83% and the Caribbean in 33.3%.
  
• Only 20% of countries in the region still do not have a National Registry of patients with coagulation disorders?
  
• All countries in the Region that participated in this initiative register women with coagulation disorders
  
• There is a wide variety of options used by countries to register MTC. The most used is “Other coagulopathies” and only 15% of participating countries use the categorization proposed by WFH for women and hemophilia.
  
• Most women are included in these registries because of “Relationship to a person with a bleeding disorder.”
  
• Only 3 countries have several diagnostic tests for these women. The rest of the countries could not respond.
  
• It is considered that 47.6% of women registered in different countries have medical care in some specialties.
  
• 28% of the countries surveyed have exact data on how many women they have registered
  
• There is agreement when asking about what needs to be improved or deepened in relation to TCM in the region: Education, awareness and Medical care.

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