Development of HHT Centers of Excellence

In this newsletter, we have announced the addition of The University of Florida to the North American Centers of Excellence (CoE) team.  This is great news for people with HHT living in Florida who have been looking forward to a place where they can be seen in their home state.  While people in and near Florida will directly benefit from this addition, all of us with HHT will benefit indirectly as well.  When a new center opens that means more physician experts are added to the HHT community.  This increases our knowledge about how HHT affects people, what types of treatments are beneficial and enlarges the pool of potential clinical research sites to help us develop new tests, procedures and medications which may improve the lives of all people with HHT.  It also boosts the number of medical personnel and trainees who learn about HHT that can later bring that knowledge with them when they see patients.

The process of adding a CoE is thorough and involves a number of rigorous steps that Cure HHT follows to ensure that these centers are adding value for our community.  Many of these are done behind the scenes and it may be helpful to understand the process that takes place.

The start of the process usually begins with a physician at an institution who has an interest in HHT, often because they have trained at an established CoE.  That physician will often find other physicians in the same hospital or university that has an interest or experience in HHT.  These physicians may then reach out to Cure HHT to let us know of their interest in seeing HHT patients and may place themselves on the physician resource directory.  As their experience increases, they may increase their interactions with the Cure HHT community and attend webinars, meetings, etc.  At some point, a goal of becoming a CoE is discussed and an application is completed.  Once a formal application is received, it is examined and if the level of expertise and interest needed is present, the proposed center is assigned a mentor center.  Conferences calls and a visit to the mentor center is made to see how a CoE works best.  A mentor center report is sent to the CoE executive committee.  If there are concerns made in the report, these are addressed and the application may be put on hold until these concerns are met.  Once the report and any concerns are addressed, representatives from the committee visit the institution where each of the staff is interviewed and an anonymous chart review is completed.  This is a one or two day event.  Once this step is completed a report is made and any concerns that were found are then addressed.  When everything is felt to be satisfactory, the committee will vote to move forward with a recommendation to the Cure HHT Board of Directors who provide the final approval for the center.

It is worth noting a few things about the process.  It is not a short process.  While patients understandably want to see centers added, it is important that the centers are added only when they are ready.  This may delay, or even eliminate, the opening of some proposed centers.  However, the opening of new centers has been a priority for Cure HHT and over 20 have been opened in the last decade.  Also, the people involved in the process are volunteers.  The patients, physicians and board members on these committees do this work without compensation and on their own time and they do so because of their interest in HHT and their compassion for the people with it.  We owe them a great deal of gratitude for their efforts on our behalf.

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