Erica Thayer   |   September 27, 2019

ACHA + Project Heart Partnership


Project Heart and the Adult Congenital Heart Association (ACHA) are teaming up for CHD research! 

Project Heart and ACHA have partnered to fund three fellows doing research that will further the field of CHD. Each fellow was given $10,000 in the form of a one-year grant. We believe in and support ACHA and the three grant recipients as they move the needle forward towards a cure for CHD! 

Grant Recipients 

Nael Aldweib, MD of Boston Children’s Adult Congenital Heart Disease Program

Aldweib is doing research to see if continued measurement of an ACHD patient’s high sensitivity C-reactive protein (hsCRP) can be a telling cue of their long term prognosis and medical needs throughout life. HsCRP indicates chronic low-level inflammation. Patients with high amounts of hsCRP have a higher likelihood to have “adverse clinical outcomes.” What that means for ACHD patients is a higher risk of hospitalization due to things like heart failure and arrhythmias. Currently, continued measurement of hsCRP is not being done. Dr. Aldweib wants to know if continued measurement of the protein can help direct long term clinical care and other directives. 

“The overarching aim of this study is to define how repeated measurements of hsCRP may further inform our understanding of a given patient’s health status and prognosis,” Aldweib wrote. This is a two part project. First, patients who have previously enrolled in a continued ACHD Biobank who have had their hsCRP measured at the time of enrollment and again two years later will be assessed for changes in hsCRP. They will then see if the protein changes correlate to the patient’s current health state. Second, ACHD patients in heart failure will have their hsCRP measured when they are admitted to the hospital and again after treatment is done. The hsCRP levels will then be assessed to see if the changes are related to treatment and the current quality of life. “This study is feasible within the 1-year grant period and will help to clarify the appropriate place of measurement of hsCRP in the clinical management of ACHD,” Alsweib believes. 

Carla P. Rodriguez-Monserrate, MD of Boston Children’s Adult Congenital Heart Disease Program

Rodriguez-Monserrate is doing research on cognitive impairments in ACHD patients. Children with CHD most often also have neurodevelopmental and psychosocial impairments especially in areas like memory, attention and behavioral control. Though not widely researched, current studies suggest there are similar cognitive and mental health impairments in the adult CHD populations like early-onset dementia.

 “The goal of our proposal is to bridge the gap in knowledge between known cognitive deficits in childhood CHD and cognitive status in adults with CHD,” Rodriguez-Monserrate wrote. Dr. Rodriguez-Monserrate plans to accomplish these findings by using the Mini-mental State Exam (MMSE). Adult CHD patients will take the MMSE and come to routine clinical visits. Their scores will be compared to those of the education adjusted population averages in areas like attention, calculation and recall. Then, they will analyze whether their scores are associated with the complexity of their CHD, demographics, and clinical risk factors. The hypothesis is that lower MMSE scores will correlate with a more complex CHD. “Our ultimate goal is to identify early, modifiable risk factors for adults cognitive performance with the intent that early identification and intervention may modify that natural history to improve outcomes.” In other words, if the hypothesis is true, they want to ensure early intervention to help combat adult CHD cognitive issues. 

Jill M. Steiner, MD, MS of University of Washington’s Division of Cardiology

Steiner is doing a qualitative research study to see how the Promotion Resilience in Stress Management (PRISM) intervention can be adapted to promote resilience in adults with CHD. Dr. Steiner and her team will conduct individual interviews with adult CHD patients with moderate or complex CHDs. 

The interviews will focus on determining the patients current perception of their resilience, what influences it, and examples of what they have used to maintain their resilience. Then a discussion on PRISM skills and their relevance to the patient will be conducted. Finally, modifications to resilience resources and strategies will be made to adapt PRISM to be used in the ACHD population. “The findings of this study will allow for a better understanding of the way patients with ACHD view and utilize resilience in their daily lives. It will result in an action plan for adapting PRISM for use in this population, with the goal of improving quality of life through enhanced resilience,” said Dr. Steiner. 

Thank You!

Thank you to our donors for supporting us so that we can support those conducting CHD research. We appreciate your donations, time and encouragement as we continue on the path to cure CHD. We hope to see you at ACHA’s Nashville Walk for 1 in 100 Saturday, September 28th, 2019!

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