The FORCE Registry
Please consider supporting the FORCE Fund (formerly known as Evan's Heart Fund), which will directly impact the lives of all individuals like Evan living with a single ventricle (half a heart). The FORCE registry is like "a crystal ball" as Dr. Rathod likes to use as an analogy. For example, it will allow cardiologists to predict when a heart is going into failure before it is too late. Doctors can use medical intervention, like medicine or surgery, to address the issue. Evan's cardiologist, Dr. Rathod of Boston Children's Hospital, is the lead doctor on this life-changing initiative.
Which Hospitals are Involved?
The FORCE Registry is a multi-center initiative with 6 large children's hospitals involved, including Boston Children's, CHOP, Toronto Sick Kids, Texas Children's, Ann Arbor, and Nationwide Children's. Once these main centers have launched the FORCE registry will be open to centers in N. America and Europe. An additional 22 centers have already expressed interest in being involved.
Why do we need the FORCE registry?
Single ventricle patients are living much longer (approximately 40% live to 30 y/o). Little is known on how to treat these patients as they grow older. This registry will help to extend their lives, as well improve their quality of life. Some questions the registry will help to answer are:
- Can we predict the future?
- Can we identify the kids and adults who are at risk for bad things that might happen?
- Can we turn back the clock and prevent them from going down that path?
- How can we help kids like Evan lead a full and healthy life?
How Does it Work?
The FORCE registry is a multi-center retrospective research study that will use imaging and clinical outcome parameters from all centers involved. The data will be entered into a database and then manipulated using CMR Examinations to predict patient outcome. It will help to identify issues that can then be addressed before death or a need for a transplant occurs. Single ventricle patients are at risk for, but not limited to arrhythmias, cardiac arrest, protein-losing enteropathy, plastic bronchitis, stroke, and blood clots.
How Can you Help?
To date, we have raised nearly $50k from our annual fundraiser. This is incredible. THANK YOU. However, the FORCE registry needs large sums of money to get off the ground. The registry needs a centralized infrastructure to house the data, research assistants to post-process the image data, data managers to do quality assurance, and statisticians to do the analysis. Additionally, each site needs funds to hire research assistants to enter all of the data into the registry.
Updates Since Last Year's Ride
- Scientific Review Committee and IRB approved the protocol
- FORCE Registry website has been established
Evan is 2 3/4 years old. He and James started going preschool this year two days a week. Evan is excited and eager to go to school and has shown us that he smart, caring, kind, and funny. He is able to keep up with his friends academically, but physically he is behind. As a mother, it is hard to hear that Evan couldn't make it up the steps without being carried after recess. Despite some difficulties at school, we feel blessed that he is healthy enough to attend... something we were not sure he would ever do. Life with a child who's future is unknown teaches you to really appreciate each milestone, sometimes it's as simple as starting preschool, or growing molars, something I wasn't sure I'd ever see. Each moment with Evan, and all of our children, is truly a blessing.
Evan will have his "final" open heart surgery in March, known as the Fontan. However, this is NOT a cure. Evan will need further medical intervention and possibly a heart transplant as most single ventricle individuals eventually require. A lot of people ask me when will Evan need a transplant? This is unknown. Some single ventricle babies require transplants, some live pretty normally until their teens and then need one. I pray Evan can live a "normal" and active/ happy life for as long as possible before needing a transplant. Transplants do not last forever. This is our "last" resort for him.
Please help us in our efforts to continue to support this amazing registry, which will directly impact our son’s life, as well as all single ventricle individuals. This is a lifelong disease. The surgeries will not “fix” Evan’s heart. It is vital to have the Fontan registry so doctors can make the best decisions for their patients, like Evan.