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The Center for Craniofacial Research is dedicated to advancing the treatment of children with craniofacial anomalies through carefully designed clinical studies.

The results of these studies are presented at national and international meetings and published in scientific journals to help increase our understanding of different clinical problems.

Summaries of these studies are listed below.

Each study has been approved by Seattle Children's Institutional Review Board (IRB) before starting.

If a family or patient is eligible to be involved in a study, they will be invited to participate. Participation is entirely voluntary, and does not affect the care a child will receive in any way.

If you have any questions about these studies, please contact the Craniofacial Center at 206-987-2528.

Epidemiology of Craniofacial Conditions

Dr. Jacqueline Starr studies the epidemiology of craniofacial conditions, including causes and clinical outcomes.

Dr. Starr is developing several projects to investigate possible causes of craniofacial microsomia, one of the most common craniofacial conditions. Craniofacial microsomia typically involves underdevelopment of the jaws and ears and often impacts hearing, speaking, chewing and breathing.

Almost nothing is known about the causes of craniofacial microsomia.

Dr. Starr will use data from birth certificates to explore what prenatal, obstetric and infant characteristics are associated with the occurrence of craniofacial microsomia in Washington.

Dr. Starr will also conduct a genetic study to look at possible genetic causes of craniofacial microsomia.

As the epidemiologist for the Craniofacial Outcomes Research Program (CORP), Dr. Starr collaborates with other members of the craniofacial team on a number of research projects designed to investigate clinical outcomes, including:

  • Estimating the distances traveled for dental and orthodontic care by patients with craniofacial conditions in Washington. This study is part of a larger study of factors that influence patient's ability to access their medical care.
  • Comparing complication rates following primary cleft lip and/or palate repair in hospitals performing many versus few such procedures per year
  • Evaluating risk factors for obstructive sleep apnea among children with craniofacial conditions

Midface Distraction

Children born with syndromic craniosynostosis often have small cheekbones and upper jaw (midface) that cause problems with breathing, sleeping, eating and eye protection.

To treat these problems, they often require surgical advancement of their facial bones in early childhood.

Distraction osteogenesis is a technique to move the midface larger distances than is possible by other, more traditional techniques.

Although distraction osteogenesis of the midface was first reported 10 years ago, and has been done here for more than three years, the center continues to study the long-term outcomes in order to better serve future patients.

Dr. Richard Hopper and the distraction team performed 15 cases of upper midface distractions (Le Fort III type) between 2002 and 2004.

Studies are underway here to answer a number of questions about midface distraction:

How stable are the bones of the face in their new position one year after the distraction surgery?

Using detailed cephalometric (measurement of the head) analysis, the team is finding that the distracted bones are very stable, and show no signs of relapse or movement after the surgery is complete.

How do children and families undergoing midface distraction feel during distraction?

The team surveyed and interviewed patients and their families during distraction. The team is using this information to constantly improve the experience for future patients.

The results will be published in a scientific journal in the near future to assist other craniofacial programs in the country that are just starting to use midface distraction.

How and when does the new bone form behind the upper jaw after distraction?

This is an important question since little is known about the special tissue called "generate" that forms bone after distraction.

Using fine-cut 3-D CT scans and digital analysis, the team is describing the timing and architecture of the new bone as it forms after distraction.

Communications and Speech Research

The Childhood Communication Center at Children's is providing life-changing treatment for children who are deaf or hard of hearing or have complex speech problems.

A child's ability to communicate can be impaired by a number of different factors such as congenital abnormalities, deafness, partial hearing loss, tracheotomies, craniofacial surgery, cancer of the neck or jaw, weakened muscles in the palate and throat and neurological issues.

Under the leadership of Dr. Kathleen Sie, the Childhood Communication Center is proving to be an inspiring model for other hospitals around the country.

The results of this research will help improve speech processing technology as well as surgical techniques and follow-up care.

Eye Movement Abnormalities

Eye movement abnormalities and crossed eyes (strabismus) are common manifestations of craniofacial disorders.

Dr. Avery Weiss and Jim Phillips are leading laboratory research into the reasons underlying these eye problems.

Their analysis utilizes:

  • Clinical assessment of gaze dependent eye alignment and visual function
  • Quantitative assessment of paired eye movement and the inward or outward rotation of both eyes
  • Evaluation of muscle paths using non-invasive imagining techniques
  • Biomechanical modeling of binocular alignment before and after craniofacial or eye-muscle surgery

Collectively these techniques have led to improved understanding of the basic oculomotor physiology and visual consequences of these disorders.

The overall goal is to optimize the visual outcomes and surgical management of these complex disorders.

Risk Factors for Positional Plagiocephaly

Christy McKinney is a doctoral student in the Department of Epidemiology at the University of Washington conducting her dissertation research on positional plagiocephaly at the Craniofacial Center.

Under the mentorship of Dr. Jacqueline Starr, she is currently working on a large case-control study of positional plagiocephaly involving over 3,000 cases.

The primary aim of this study is to describe and evaluate risk factors for plagiocephaly among children referred to the Craniofacial Center between 1994 and 2002.

In addition, she is developing a study to evaluate birth and early life risk factors among twin pairs, where one twin has positional plagiocephaly and the other does not.

Figure 1.

Figure 1. New bone formation in the advancement gap between the maxilla (right) and skull base (left) four weeks after distraction — early bone is forming in the gap, but not enough to support the new face position without the patient wearing the distraction device.

Figure 2.

Figure 2. The same patient eight weeks after the distraction. New bone is now forming across the bone gap and giving enough support for the distraction device to now be removed.

Figure 3.

Figure 3. The same patient one year later. The previous bone gap is now one solid piece of bone. Images like these are being digitally analyzed in three dimensions to help understand the complex architecture of this new bone.

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