The CARE Studies

The CARE Interview Study

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 CARE International Online Survey

This survey formed part of Study 2 and is the largest study surveying the impact of CFM. The survey was developed from the interviews with participants of The CARE Interview Study (Study 1). The key themes from these interviews were synthesized and used to develop the survey topics.  A big thank you to everybody who took part in The CARE Interview Study (Study 1), you all played a key role in the survey development.

The survey was available across 5 different English-speaking countries: Australia, Canada, New Zealand, United Kingdom and United States of America.

Interviews with Healthcare Providers

Our team explored the current standard of healthcare through interviews with healthcare providers who are frequently involved in the care of individuals with craniofacial microsomia, as well as international advocacy groups. We wanted to better understand the current state of healthcare delivery, feedback regarding the effectiveness of the current state for meeting the needs of the patients, and identify opportunities for improvement. Our goal is to understand if the psychological needs of individuals affected by craniofacial microsomia, and their caregivers are met with the current healthcare standards.

Participation consisted of a semi-structured interview on Microsoft Teams that lasted approximately 1 hour. We looked for a diverse representation among clinical specialties and geographic locations across the US to participate.

Interviews with Advocates

Our team explored the current standard of healthcare through interviews with patient advocates who are frequently involved in the care of individuals with craniofacial microsomia, as well as international advocacy groups. We wanted to better understand the current state of healthcare delivery, feedback regarding the effectiveness of the current state for meeting the needs of the patients, and identify opportunities for improvement. Our goal is to understand if the psychological needs of individuals affected by craniofacial microsomia, and their caregivers are met with the current healthcare standards.

Participation consisted of a semi-structured interview on Microsoft Teams that lasted approximately 1 hour.

The CARE Registry

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 experiences 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.