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Craniofacial microsomia:
Accelerating
Research and
Education

 

Mission

We serve the craniofacial microsomia community, which includes individuals born with craniofacial microsomia and their families, healthcare teams, researchers, advocacy groups, education systems, policy makers, and members of the public.

We seek to learn about the lived experiences of the craniofacial microsomia community to improve well being and to make a lasting difference to the craniofacial microsomia journey both now and in the future.

We enrolled 121 participants from 30 states for the CARE Interview Study (Study 1)!

In order to use consistent language throughout our current study, 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).

Research Article Spotlight: We are pleased to share that the CARE Team wrote a paper Early Experiences of Parents of Children with Craniofacial Microsomia that was accepted for publication in the Journal of Obstetric, Gynecologic & Neonatal Nursing. Thank you to all the families that contributed to this exciting research!

CARE Studies

CARE Registry (Click here!) – We created a registry for individuals, caregivers, healthcare providers and advocacy groups that are interested in participating in research in the future.

International Online Survey (Enrollment closed) – We wanted to learn more about the mental health of individuals with CFM or individuals caring for someone with CFM. We invited international participants to complete an electronic survey.

Interviews with Providers and Advocates (Enrollment closed) – We explored the current standard of healthcare through interviews with healthcare providers that are frequently involved in the care of individuals with CFM, as well as leaders in international advocacy groups. We wanted to understand if psychological needs of individuals affected by CFM and their caregivers are met with the current healthcare standards.

The CARE Interview Study (Enrollment closed) – We wanted to know how CFM has affected the lives of adolescents and young adults with CFM, as well as caregivers of children with CFM who live in the United States. We invited adolescents, young adults, and caregivers to participate in a medical and surgical history interview, provide images, and complete an open-ended life story interview.

The Craniofacial Microsomia: Accelerating Research and Education (CARE) study is funded by a grant (1R01DE029510-01) from the National Institute of Dental and Craniofacial Research.