New Parents
Frequently Asked Questions
-What is the Registry?
The Chromosome 18 Registry & Research Society is an advocacy organization composed primarily of the parents of individuals with a chromosome 18 abnormality. We support families through events, advocacy, education and connection.
-What is the Research Center?
The Clinical Research Center is based in San Antonio, Texas. The research center is Dedicated to empowering individuals and families affected by chromosome 18 abnormalities, we strive to provide comprehensive medical and educational information, emphasizing viable treatment options to enhance their quality of life. Led, by Dr. Cody, the research center has over 700 individuals affected by chromosome 18 conditions enrolled in research.
-How do I enroll in the research study?
- Fill out and submit response form
- The Participant Coordinator (Catherine McCarthy) will then contact you to answer questions and provide the specifics of enrollment
- Complete the informed consent process
- Send medical records including the diagnostic laboratory report that found a chromosome 18 abnormality
- Send blood from the affected person and their biological parents (when available) in the blood kit provided by the study for genetic analysis
Visit https://wp.uthscsa.edu/chrome-18/enrollment/ to learn more!
-Clinical management guides
The Clinical Management Guides are focused on understanding and improving the lives of people with Chromosome 18 abnormalities and reorganized these data into a format that would be more usable for the clinicians who manage the care of these individuals. The management guides are divided into 3 major parts:
- A 60 second summary for those who just need a brief overview
- The actual Management Guide which begins with a table of contents-type summary
- Instructions for creating a personalized management guide based on an individual patient’s unique chromosome 18 change
Find the Clinical Management Guides Here: https://wp.uthscsa.edu/chrome-18/resources/clinical-management-guides/
-Clinical Research Center tour
Every quarter Chromosome 18 holds a virtual tour of the Clinical Research Center, over zoom, for anyone around the world to join in. This tour is led by Dr. Cody, she shows us the lab where they do research and at the end of the tour you are able to ask your questions directly to Dr. Cody.
Learn more about our virtual events here: https://www.chromosome18.org/events
-What you will expect when you join as a member
- Welcome email
- Outreach from the registry’s, program coordinator
- Connect right away with syndrome and regional coordinators
- Monthly email updates for C18 research, newsletter and events
- Help and support from C18 program coordinator and staff
- Connection to our VP of member relations
- Access to private Facebook pages
- Access to virtual events
-What is a regional and syndrome coordinator?
Coordinator positions are filled by individuals who have volunteered to connect you with resources and events in your area or about your syndrome. They are parent volunteers who will help you to the best of their abilities.
-Events Overview
Every month, Chromosome 18 hosts at least 3 virtual events for our families that are a part of the registry. They are on zoom and completely free! Topics can range from medical, educational, connection events or social events!
Learn more from our Events Calendar that is updated frequently with new events.
-New member calls
Four times a year, we host new member calls for families who have joined the Registry recently.This call is over zoom, free and a great way to connect to key people in the registry right away.This call is a great place to ask questions and connect with other new families
-Facebook groups list:
C18 Registry Great Lakes Regional Group
C18 Registry Great Plains Regional Group
C18 Registry Mid-Atlantic Regional Group
C18 Registry Northeast Regional Group
C18 Registry Northwest Regional Group
C18 Registry Rocky Mountain Regional group
C18 Registry South Central Regional Group
C18 Registry Southeast Regional Group
Chromosome 18 Southwest Region
C18 Registry Texas Area Regional Group
-How do I join events?
Every month, Chromosome 18 hosts several virtual events to give support to our families. To join, check out the C18 events page, click on the event you are interested in and you can register over zoom. All of our virtual events are free to our families.
-What is the annual conference?
Interested in coming to conference for the first time? Check out our FAQ’s for our first time families!
-Where do I get medical and doctor recommendations for my area?
–Regional Facebook pages. Check out all of the Facebook groups here: https://www.facebook.com/chromosome18Registry
–Reach out to your coordinator from your welcome email
–Private Facebook page is a great place to ask questions to other C18 families. Your posts can also be completely anonymous if you want!