Assessment & Research

Nurse recognition of early deviation in development in home videos of infants with Rett disorder.

Burford et al. (2003) · Journal of intellectual disability research : JIDR 2003
★ The Verdict

Trained nurses can spot early Rett signs in home videos months before standard screening, especially unusual hand postures in newborns.

✓ Read this if BCBAs who assess infants or work with families awaiting genetic results.
✗ Skip if Clinicians serving only verbal school-age clients.

01Research in Context

01

What this study did

Researchers asked nurses to watch silent home videos of babies who later got Rett syndrome. The nurses did not know which babies were which. They looked for any early sign that something was off.

The team compared hits and misses between future Rett babies and typical controls. They wanted to see if nurses could spot trouble before doctors usually do.

02

What they found

Nurses pressed the red flag button far more often for the future Rett group. The gap showed up from the very first month of life.

Odd hand postures caught their eyes the most. These tiny clips were enough for trained nurses to sense a problem months before regular screening.

03

How this fits with other research

Nickerson et al. (2015) used the same home-video trick. They found that girls with preserved-speech Rett later out-perform typical Rett in social reciprocity after 12 months. Together the papers show nurses can catch Rett early, and the subtype shapes later social growth.

Berkovits et al. (2014) tested neonatal suspicion in Down syndrome. Doctors spotted most DS babies on day one using face and tone cues. The Rett study widens the lens: nurses can also pick up subtler, slower-onset conditions from simple home clips.

Vassos et al. (2016) surveyed parents who said their Rett kids want to interact but cannot. That fits with Burford et al. (2003): early odd hand moves, not social disinterest, are the first red flag.

04

Why it matters

If you assess infants or coach families, know that brief silent videos can reveal Rett signs before the six-month check-up. Train your eye on hand posture: fingers splayed, wrists twisted, or repeated clasping. When parents share baby clips, invite a second trained viewer to code what you both see. Early flags buy time for genetic testing and early therapy, even before the regression stage begins.

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Review your next parent-submitted baby video twice: once for social smile, once for odd hand or finger postures.

02At a glance

Intervention
not applicable
Design
other
Sample size
25
Population
other
Finding
positive
Magnitude
large

03Original abstract

BACKGROUND: In the genetic Rett disorder (RD), infants make some progress then suffer a dramatic developmental regression, usually before 2 years of age. Home videos, taken before the problems are recognized, offer an objective source for detecting early signs. METHODS: Thirty-six health visitors and midwives were invited to view brief examples from home videos of a cohort of 14 infants with RD and 11 control infants with normal development in the first year of life, and to indicate, by pressing a button, points in the recordings which aroused their suspicion of developmental deviation. They were then invited to comment on their selection. The participants were blind as to whether any individual example showed an infant with normal development or one with some form of developmental disturbance. RESULTS: From the first month of life and throughout the first year, infants with RD received more button presses than controls (46%, 361 out of 778 viewings) in comparison with the control group (12%, 67 of 558). The consistent nature of the health professionals' comments made possible their categorization under four headings: appearance, posture, movement and contact. In the first month of life, the hand postures of infants with RD received particular comment from midwives (23 out of 37 comments overall on posture). CONCLUSIONS: The present study strongly suggests the presence of early signs of developmental deviation in infants with RD, although, in most cases, formal developmental screening procedures have failed to detect these before the ages of 12 or 18 months.

Journal of intellectual disability research : JIDR, 2003 · doi:10.1046/j.1365-2788.2003.00476.x