Kids & Families Impacting Disease through Science (KIDS) Georgia Chapter
The Atlanta Clinical & Translational Science Institute (ACTSI) announces the launch of a Kids and Families Impacting Disease through Science (KIDS) Georgia Chapter led by the ACTSI’s Pediatric Research Center (PRC) at Children’s Healthcare of Atlanta, Egleston. KIDS is a collaboration between the American Academy of Pediatrics (AAP) Section on Advances in Therapeutics and Technology, local AAP Chapters, children’s hospitals, universities, private pediatric groups, and local schools.
KIDS is an advisory group of children, adolescents, and families focused on understanding, communicating, and improving the process of medical innovation for children. This program pairs acute or chronically ill children (and families), children and families who have participated in research, and healthy children who are interested in science/medicine to form an advisory group. This group provides ideas and feedback on how to improve the research process.
KIDS members learn, teach, and advocate for medicine, research, and innovation which improves the health and well-being of children. Members engage in the process through projects and consultation activities with hospitals, researchers, and other partners in the public and private sectors by providing input on research ideas, innovative solutions, unmet pediatric needs, and priorities and contribute to the design and implementation of clinical studies for children. Finally, KIDS chapters serve as a critical voice for children and families in medical, research, and innovation processes.
KIDS Chapters connect with similar groups around the world, share ideas, best practices, challenges, and culture; collaborate on research projects; and advocate the health and well-being of children around the world. The Georgia Chapter received Georgia AAP approval in June 2014 and is one of five in the U.S. (with six others are under consideration). There is an International Children’s Advisory Network which includes seven groups across the world, with four more in development. The KIDS concept was piloted in Connecticut and is being expanded in the U.S. and abroad. All chapters are linked to form the International Children’s Advisory Network (iCAN).
Get Involved
KIDS Georgia is looking for kids (and families) statewide, ages 8-18 years old, who have an interest in research science and/or have been patients themselves and are interested in giving feedback on future pediatric research. Children whom have past experience with a clinical trial, experience using hospital services, some knowledge of taking medicine, interest in medicine and/or research, and the parents/guardians of such children are welcome to participate. KIDS Georgia hopes to have 50% healthy children interested in science, medicine, or related field and 50% who have been in the hospital, participated in research, or have/had a disease/condition (including the PRC patient population). The chapter also seeks pediatric researchers statewide who would like feedback from KIDS on their research. Questions?
“We look forward to building a strong program and KIDS Advisory board that will provide thoughtful, productive feedback to researchers and scientists along with an active Adult Advisory Board,” said Stephanie Meisner, RN, CCRP, PRC nurse manager, Children’s Healthcare of Atlanta, Egleston. “In research, kids get the final say, not parents, unlike with treatment decisions.”
KIDS Georgia Chapter Kick-off Meeting
KIDS Georgia hosted a fun-filled, informative kick-off meeting and tour on December 4, with nearly 20 children and families in attendance. The meeting started with a VIP tour of the Georgia Institute of Technology (Georgia Tech) Invention Studio used by research scientists, a KIDS Georgia information session and presentation by ACTSI-supported start-up company SonoFAST, and visit to the Georgia Tech Capstone Design Expo.
The tour was led by the President of the Invention Studio and Georgia Tech arranged one of last semester’s Capstone Design Expo winners, SonoFAST, to speak to the KIDS about their invention and design of an ultrasound wand cover that allows images to be seen without any gel. SonoFAST identified the problem through observations at Grady Memorial Hospital and then investigated the issue through a Senior Capstone Design project. The first prototype was made of candlewax gel which allowed a clear image without the mess and was hot/cold tested in the team’s at-home kitchen. Additionally, SonoFAST used equipment seen on the Invention Studio tour to cast their first molds. The team won two awards during the spring 2014 Capstone Design Expo and created a start-up company focused on the new product. Finally, the KIDS visited the expo and had an opportunity to walk around and view/interact with student inventors and listen to how their inventions were made and problems were solved.
Future KIDS Georgia quarterly meetings will be a blend of in-person meetings/activities and online review of materials. The next meeting will be hosted by the Pediatric Research Center at Children’s Healthcare of Atlanta, Egleston in February.
iCAN Research Summit
The KIDS Georgia Chapter sent seven chapter representatives (plus their parents) and two adult advisors to the iCAN Research Summit in June 2015 in Washington, DC. WATCH a summary of the five-day meeting which included 130 children, parents, and team leaders from six different countries.
ACTSI’s Pediatrics, in collaboration with the Georgia CTSA Clinical Research Centers (GCRCs) and Children's Healthcare of Atlanta, support a Clinical Research Site located on the Children's at Egleston campus. The Pediatric Clinical Research Unit is designed to provide the necessary infrastructure for investigators conducting pediatric clinical research and is the pediatric clinical interaction research site of the ACTSI. The center improves the ability of pediatric researchers to perform innovative research while providing patients and their families with increased access to leading-edge clinical trials.
The ACTSI is a city-wide partnership between Emory University, Morehouse School of Medicine, and Georgia Institute of Technology and is one of a national consortium striving to improve the way biomedical research is conducted across the country. The consortium, funded through the National Center for Advancing Translational Sciences, part of the National Institutes of Health’s CTSA, shares a common vision to translate laboratory discoveries into treatments for patients, engage communities in clinical research efforts, and train the next generation of clinical investigators.