The CARE Registry is Here!
The CARE Registry is an international, web-based registry that will help us answer questions about craniofacial microsomia. We plan to collect data from patients and their families who are generous enough to share their experience with us. Participation in the CARE Registry will add to our collective understanding of craniofacial microsomia.
We hope to:
· Answer research questions that are important to you
· Share data that describes the CARE registry participants
· Identify individuals who are interested in participating in other research opportunities
*We recommend that you use a desktop or laptop to when completing the registry surveys.
Frequently Asked Questions
+ What is the purpose of a registry?
We are building an international web-based registry with the purpose of:
• Collecting research ideas and priorities from the craniofacial microsomia community.
• Answering research questions important to the craniofacial microsomia community.
• Collecting data from individuals with craniofacial microsomia and their families over time.
• Identifying registry participants who are interested in future research opportunities.
+ What is craniofacial microsomia?
Individuals with craniofacial microsomia can have one part of the face that is smaller, and this most commonly includes the ears and jaw. Craniofacial microsomia can also affect the eyes, cheeks, kidneys, and spine. Craniofacial microsomia is the second-most common birth condition affecting the face. The most common is cleft lip or palate. Clinicians and researchers are working on a standard way to diagnose the condition. Currently, we think that 1 in 5,600 to 1 in 26,550 children are born with this condition each year. It is more common in boys than in girls.
+ What would I be asked to do?
You would need to give your permission to be in the registry. You would be asked to complete surveys. We think this would take about 1 hour. We would ask you to complete surveys again in the future – probably once a year, lasting about 45 minutes. We would also ask for a few pictures of your head and face.
+ How will I know if I can be a part of the registry?
We consider craniofacial microsomia to be a broad term that also includes the following diagnoses: microtia, hemifacial microsomia, Goldenhar syndrome, and Oculo-Auriculo-Vertebral Spectrum (OAVS). If you have one of these diagnoses, you are likely eligible for the registry. Please contact our study team at CAREstudy@seattlechildrens.org or 1-206-884-1606 if you have questions.
+ Can my parent participate?
Yes! We are inviting all parents who have a child that is eligible to be a part of the registry.
+ Can my child participate?
Yes!
- For children 12 years and younger, the parent provides parental permission for the child to participate in the study. At this time, we would only ask for pictures of the child’s head and face.
- Children 13 years to the age of majority* are invited to participate in the registry, and will need to complete an assent form and have their parent complete a parental permission form before they can fill out surveys.
- *Age of majority is a term that describes the age at which the government sees the individual as an adult. This age varies depending on state and/or country. Individuals who are minors, and have not reached age of majority, will require parental permission to participate.
+ How often do I need to complete surveys?
At the time of enrollment and once a year after that.
+ Why do you need my picture?
We are asking for pictures of the head and face and will use your photos to help us understand CFM.
+ What will my data be used for?
We will use your data to answer questions that are important to the craniofacial microsomia community. Your data will also be used to help us identify research ideas and priorities from the craniofacial microsomia community.
+ Why does it take so long to find answers?
To make progress in learning more about craniofacial microsomia, we have to break it down into many questions and study them one at a time, like: Why does craniofacial microsomia affect people in different ways? When does a specific treatment, like surgery for the jaw, help? Then we can put the answers together to understand the larger picture of craniofacial microsomia.
Each study can take years. Fortunately, we’re teaming up with craniofacial microsomia experts and individuals with craniofacial microsomia (and their parents) throughout the U.S. and internationally. Like us, these experts are united by a passion for finding better ways to help families. And we won’t give up until we have answers.
+ How can families help?
Our research wouldn’t be possible without help from people with craniofacial microsomia – and we’re incredibly grateful for families who participate in the CARE Registry. The registry is a new project and we need your help to gather information to study craniofacial microsomia. The more information we have, the faster we can find answers.