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PERSPECTIVES

A Call for Early Detection of Cerebral


Palsy
Faith Kim, MD,* Nathalie Maitre, MD, PhD,† on behalf of the Cerebral Palsy Foundation
*Department of Pediatrics, Columbia University Irving Medical Center/NewYork-Presbyterian Children’s Hospital of New York, New York, NY

Department of Pediatrics, Emory University School of Medicine, Children’s Healthcare of Atlanta, Atlanta, GA.

PRACTICE GAPS

Clinicians caring for infants who are at risk of developing cerebral palsy
(CP) should be familiar with standardized assessment tools including the
General Movements Assessment and the Hammersmith Infant Neurological AUTHOR DISCLOSURES Dr Maitre has
worked under grants from the National
Examination. Clinicians trained in these tools can use them to make an
Institutes of Health and the Cerebral
early, accurate diagnosis of CP to allow for earlier intervention and Palsy Foundation; owns a patent, care of
improved outcomes. Enlighten Mobility and Thrive
Neuromedical; and is a cofounder of
Thrive Neuromedical. Dr Kim receives
support as a principal investigator for the
OBJECTIVES After completing this article, readers should be able to: Cerebral Palsy Foundation Early Detection
Initiative and has received honoraria for
being a guest speaker, courtesy of
1. Describe the changing spectrum of cerebral palsy (CP) diagnosis in Hackensack University and Morristown
infants treated in NICUs. Medical Center. This commentary does
not contain a discussion of an
2. Describe the development and implementation of clinical guidelines for unapproved/investigative use of a
early detection of CP. commercial product/device.

3. Recognize the utility of General Movements Assessment, Hammersmith


Infant Neurological Examination, and neuroimaging in the early ABBREVIATIONS

detection of CP. AIMS Alberta Infant Motor Scale


ASD autism spectrum disorder
CP cerebral palsy

ABSTRACT CS
cUS
cramped synchronized
cranial ultrasound
Cerebral palsy (CP) is the most common physical disability across the DAYC Developmental Assessment of
Young Children
lifespan, but historically, CP has not been diagnosed before the age of 2
EDI Early Detection and
years. Barriers to early diagnosis ranged from lack of available biomarkers, Implementation
absence of curative treatments, perceived stigma associated with a lifelong ELGAN Extremely Low Gestational Age
Newborn Study
diagnosis, and a desire to rule out other diagnoses first. Most importantly,
FM fidgety movement
the fundamental question that remained was whether children would GMA General Movements
benefit from earlier detection and intervention given the paucity of Assessment
research. However, evidence-based guidelines published in 2017 GMFCS Gross Motor Function
Classification System
demonstrated that the General Movements Assessment, the Hammersmith HIE hypoxic-ischemic
Infant Neurological Examination, and neuroimaging can be combined with encephalopathy
other elements such as a clinical history and standardized motor HINE Hammersmith Infant
Neurological Examination
assessments to provide the highest predictive value for diagnosing CP as
HRIF high-risk infant follow-up
early as age 3 months in high-risk newborns. Implementation of these IVH intraventricular hemorrhage
guidelines has been successful in decreasing the age at CP diagnosis, MRI magnetic resonance imaging
PVL periventricular leukomalacia
particularly in high-risk infant follow-up clinics with expertise in performing
TIMP Test of Infant Motor
these assessments. Early detection of CP allows for clinical and research Performance

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opportunities investigating earlier interventions during a critical period of neuroplasticity, with the goal of
improving developmental trajectories for children and their families. New guidelines and research are now being
developed with a focus on early, targeted interventions that continue to be studied, along with global detection
initiatives.

INTRODUCTION recent Canadian study used a prognostic bedside tool inte-


Cerebral palsy (CP) is the most common physical disabil- grating risk factors in the neonate and pregnant person
ity across the lifespan, with approximately 10,000 infants (eg, tobacco use, diabetes, preeclampsia, intra-amniotic in-
with a new diagnosis of CP every year in the United fection) and identified twice as many children with CP in
States. (1)(2)(3)(4)(5)(6) Although the prevalence of severe low-risk term infants compared with those who presented
forms of CP has declined, the overall prevalence of the dis- with neonatal encephalopathy; however, this algorithm
order has remained unchanged despite advances in obstet- has not yet been proven to be generalizable across popula-
ric and neonatal care. (7)(8)(9) Children with CP can be tions. (32)
broadly categorized into groups based on their level of risk Standardizing practices to facilitate early detection of
at birth: CP across all groups of infants based on scientific evi-
dence will optimize identification and support the develop-
1. Term infants with hypoxic-ischemic encephalopathy ment of additional effective interventions for affected
(HIE) infants. In this article, we review the definition and risk
2. Preterm infants factors for CP as well as the history of early detection, in-
3. Infants with identifiable and diverse risk factors such troducing readers to the basic elements and principles be-
as stroke, intrauterine drug exposure, cytomegalovirus, hind assessment tools being implemented in high-risk
and other infectious diseases infant programs across the world.
4. Infants with no identifiable risk factors (10)(11)(12)(13)
OVERVIEW OF CP
Among infants with moderate to severe HIE, 19% de- The definition of CP has been debated dating back to 1861
veloped CP by 2 years of age despite therapeutic hypother- when William Little first described a condition as “cerebral
mia, compared with 31% of nontreated infants. (14)(15) paresis” that started in childhood and persisted across a
(16)(17)(18)(19)(20)(21) Furthermore, it is well-established person’s lifespan. (33) The most cited definition in the lit-
that the risk of CP increases with decreasing gestational erature reflects a large international consensus and reads
age. (7)(22)(23)(24) A large systematic review demonstrated as follows: “[CP] describes a group of disorders of the develop-
a pooled prevalence of CP of 59 in 1,000 live births in in- ment of movement and posture, causing activity limitation that
fants weighing 1,000 to 1,499 g at birth and 112 in 1,000 is attributed to non-progressive disturbances that occurred in
live births in infants born at less than 28 weeks’ gestation. the developing fetal or infant brain. The motor disorders of
(9) Approximately 15% of preterm infants born between 24 [CP] are often accompanied by disturbances of sensation, cogni-
and 27 weeks’ gestation develop CP, and as more infants at tion, communication, perception, and/or behavior, and/or by a
younger gestational ages (22–23 weeks’ gestation) are sur- seizure disorder.”(34) This definition does not imply a single
viving, the rates of CP have increased to more than 20% in etiology or discrete lesion but rather describes a spectrum of
the most premature infants. (23)(25)(26)(27) However, even disease with a common phenotype but possible broad origins,
late preterm (34 to <37 weeks’ gestation) and moderately or “disturbances.”(33) Mechanisms underlying the development
preterm (32 to <34 weeks’ gestation) infants who comprise of CP are often attributed to 1) intrauterine factors (eg, placental
the majority of infants born prematurely have higher odds pathology, congenital anomalies, fetal growth restriction, drug
of developing CP compared with term infants, with white exposure), 2) peripartum events (eg, HIE, stroke, or intra-amni-
matter injury representing the predominant type of abnor- otic infection), 3) postnatal complications, most commonly due
mal neuroimaging found in this subgroup of patients. (28) to prematurity-related morbidities (eg, intraventricular hemor-
Although the American Academy of Pediatrics recom- rhage [IVH] or periventricular leukomalacia [PVL]), or 4) identi-
mends motor development surveillance at ages 9, 18, 30, fiable genetic factors. (35) However, the etiology of CP remains
and 48 months, a large proportion of term newborns who unknown in half of affected children. Recent studies have
develop CP may be undetected initially. (2)(29)(30)(31) A highlighted a more prominent role for genetic factors in the

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development of CP. Among 250 parent-offspring trios, of requiring the most support) based on self-initiated move-
which the majority (63%) were classified as having no identifi- ment; the emphasis is on sitting, walking, and wheelchair
able cause associated with CP, whole-exome sequencing identi- mobility, with the expectation that the classification remains
fied newly implicated genes in those with CP and estimated stable even into early adulthood. (44) One previous study
that 14% of cases were related to a causative genomic mutation. examining the validity of the GMFCS tool in children with
(36) A meta-analysis that included exome or genome sequenc- CP ranging from 16 months to 13 years old found that chil-
ing in individuals with CP found an overall diagnostic yield of dren younger than 6 years who were initially classified as
8% to 16% in those with risk factors for CP versus 14% to level II to IV were more likely to be reclassified, often to a
48% in those without risk factors; this finding is similar in pa- lower functional level when they were older compared with
tients with an intellectual disability or autism spectrum disorder children who were first classified as level I or V. (45) This
(ASD). (37) Thus, a genetic assessment is now included in a was particularly true in children younger than 4 years, indi-
systematic approach to an evaluation of CP. cating less reliability of this tool in predicting functional
The definition of CP acknowledges the complexity of abilities later in life for younger children. (45) Although the
this disease beyond that of a physical disability. Almost GMFCS now contains a descriptive category for infants
75% of children with CP experience another comorbidity, with CP aged 0 to 2 years, it should be used with caution
which may worsen the impact of the disorder on func- as a valid indicator of functional abilities in early childhood.
tional limitations and quality of life. (10)(38)(39) A meta- In one small study including 77 children with CP younger
analysis using data from CP registers found that most than 2 years, 42% required reclassification by the age of 4
children with CP experienced pain, 1 in 2 had an intellec- years—two-thirds of them were reclassified to a better func-
tual disability, 1 in 3 could not walk or had a hip displace- tional GMFCS level. (46)
ment, and 1 in 4 could not talk; epilepsy and other Description of CP type and distribution in the first 2
neurosensory impairments were common. (39) Children years can be challenging, especially for preterm infants.
with CP are also at high risk of developing behavioral dis- The classification algorithms developed by Dr Kuban for
orders. One study found that 7% of children with CP had the Extremely Low Gestational Age Newborn Study (EL-
ASD compared with 1% of the general population; ASD GAN) study are helpful for neonatologists as they acknowl-
was most prevalent in children with nonspastic forms of edge the difficulties in tone assessment resulting from
CP. (6) The added burdens of comorbidities are further prolonged medical stays and interrupted development.
unevenly distributed amongst different subtypes of CP, of- (47) In general, hemiplegia involving 1 side of the body,
ten lesser in those with spastic hemiplegic or diplegic var- and diplegia involving bilateral lower limbs are the most
iants. (39) Despite CP being a life-long disability, almost common subtypes of CP affecting more than 75% of chil-
all affected children are expected to have a normal life ex- dren; they are associated with lower GMFCS levels. (48)
pectancy. The lowest survival rates are reported in those Quadriplegia involves all 4 limbs and can manifest as
with more severe disabilities, particularly if they have spasticity with more severe functional limitations. (48)
other disorders such as epilepsy, severe cognitive disabil- There are 3 main types of abnormal tone including spastic
ity, or gastrostomy-tube dependence. (40)(41)(42) (87%), dyskinetic (7.5%), and ataxic (4%) CP but different
CP can be conceptualized in different frameworks, but types can coexist and are difficult to differentiate in the
the most globally accepted is the World Health Organiza- first 2 years of age. (7)(49) Spastic CP often manifests af-
tion’s International Classification of Function, which places ter damage to the periventricular white matter, (44) dyski-
disability and functioning as outcomes of interactions be- netic CP after damage to the subcortical gray matter (eg,
tween health conditions and contextual factors. (43) Evalua- basal ganglia and thalamus), and ataxic CP is most often
tion of CP then encompasses medical, individual, social, due to cerebellar injury or malformations. (49)
and environmental factors, which all contribute to health
and activity. Neonatologists are most familiar with the HISTORY BEHIND EARLY DETECTION
Gross Motor Function Classification System (GMFCS), ini- Historically, CP was thought of as an “unseen handicap,”
tially developed and validated for patients with CP aged 2 to not diagnosed due to the emerging nature of voluntary
12 years, but sometimes used in neonatal research studies movements in infancy and the delayed evolution of abnor-
for children without CP. (44) The GMFCS categorizes chil- mal tone. (50) The notion that CP was preceded by a neu-
dren with CP into 1 of 5 levels (levels I–V depending on rologically silent period prevailed, and clinicians adopted a
support needed for ambulation and mobility, with level V wait-and-see approach until recently, when the advent of

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diagnostic tools and international consensus backed by healthy infants. (53) FMs are small, circular, and multiplanar
mounting evidence has favored early detection. rapid and continuous movements that involve all parts of
the body including the extremities, head, neck, and trunk.
BASIC PRINCIPLES AND EVIDENCE OF TOOLS The presence of FMs represents a normal finding whereas the
USED FOR EARLY DETECTION absence of FMs at 3 to 4 months’ corrected age is highly
In 2017, a set of clinical guidelines based on systematic re- predictive of CP. (53)
views and evidence-based guidelines was published, which Given the need to rely on gestalt or perception of move-
delineated an algorithm that used a combination of vali- ment pattern quality, the GMA involves short video re-
dated tools to provide an early, accurate diagnosis of CP as cordings lasting 3 to 5 minutes that are then interpreted
early as 3 months in specific cases. (51) The guidelines in- after filming at 2 different time points: at term postmenst-
corporate several high-evidence assessment tools (the Gen- rual age during the writhing period and 3 to 4 months’
eral Movements Assessment [GMA], the Hammersmith corrected age during the fidgety period. Because the GMA
Infant Neurological Examination [HINE], the Developmen- has become a standardized qualitative tool with high inter-
tal Assessment of Young Children (DAYC)-2, and brain observer reliability and validity, clinicians can become cer-
magnetic resonance imaging [MRI]) that measure differ- tified as GMA basic and/or advanced readers after taking
ent but complementary constructs in addition to a clinical a 31=2-day course offered by the General Movements Trust.
history and other standardized motor assessments. (51) (54)(55)
The first study describing the predictive value of the
The GMA GMA was published by Dr. Prechtl when he evaluated gen-
General movements are part of a spontaneous motor rep- eral movements during the writhing and fidgety periods in
ertoire that are endogenously generated and are present 130 preterm and term infants with both low-risk cranial ul-
from fetal life until about 5 months’ corrected age. In the trasound (cUS) findings (eg, grade 1 IVH) and high-risk
early 1990s, Dr. Prechtl first described the GMA, a novel cUS deficits (eg, grade 2–4 IVH, PVL) and examined their
visual approach to characterize an infant’s pattern of spon- neurologic outcomes by age 2 years. (55) FMs had a higher
taneous movements. (52) He observed that the quality of sensitivity and specificity of 95% and 96%, respectively, in
these movements were altered in both preterm and term predicting neurologic outcomes compared with cUS, which
infants who had an underlying brain injury compared had a sensitivity and specificity of 80% and 83%, respec-
with healthy controls. (52) He described 2 distinct general tively. (55) Most infants with CS movements during the
movement patterns that comprise the GMA and can be writhing period developed absent FMs, and all but 1 infant
Contorneo seen in both term and preterm infants: 1) writhing move- (43/44) with absent FMs developed CP. (55) Several studies
Ajetreo ments and 2) fidgety movements (FMs). (53) During the replicated these findings, demonstrating that trajectories of
writhing period, which begins around 36 weeks’ postmenst- CS movements followed by absent FMs were highly predic-
rual age and persists until 9 weeks’ corrected age, general tive of CP. (53)(54)(55)(56)(57)(58)(59) A systematic review
movements are categorized as normal writhing, poor reper- of 19 studies on high-risk populations including preterm
toire, chaotic, or cramped synchronized (CS). (53) Normal and low-birthweight infants demonstrated a pooled sensitiv-
writhing movements involve the whole body in a variable, ity of 98% and specificity of 91% of the GMA for CP, most
complex sequence with fluent movements that start and predictive during the fidgety period around 3 to 4 months’
end gradually, occurring frequently while the infant is corrected age, which was better than the use of cUS or
awake or sleeping with no external stimuli whereas poor term-postmenstrual age brain MRI. (60)
repertoire movements are more monotonous in nature. (53)
The most significant abnormal general movements to rec- The HINE
ognize during this period are CS patterns, which are char- The HINE is a scorable neurologic examination consisting
acterized by synchronous contractions of all limbs followed of 26 items that assess cranial nerves, tone, posture,
by a relaxation phase and are highly predictive of the devel- movements, reflexes, and reactions. It can be administered
opment of spastic CP, most notably if they are present at in infants between 2 months and 2 years of age. (61) It
term-postmenstrual age. (53) At about 7 to 8 weeks’ cor- was first described in 1999 by Dr Haataja and validated
rected age, FMs start to emerge and replace writhing move- for use in a cohort of 119 healthy term infants followed
ments, persisting until 5 months’ corrected age when they until age 18 months, providing a distribution of scores
are then replaced by goal-directed, voluntary movements in across each domain. (62) It allows trained examiners to

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derive global optimality scores ranging from 0 to 78 and a standardized assessment tool that evaluates development
separate asymmetry score. It can be performed in 5 to 10 mi- from birth through age 5 years using an interactive ques-
nutes and has good interobserver reliability after training. (62) tionnaire for parents that can also be administered over
Longitudinal assessments allow examiners to differentiate be- telehealth. The physical development domain in the most
tween transient versus permanent abnormalities. The HINE updated version measures both gross motor and fine mo-
can provide both diagnostic and prognostic information in tor skills based on parental report, direct observation, or
high-risk infants. In the largest single study to date of 1,541 in- assessment and takes about 10 minutes to administer
fants discharged from the NICU, Romeo et al performed the with good reliability reported. (73)(74) Although the
HINE at different time points during the first 2 years of age AIMS, TIMP, and DAYC do not require highly special-
and reported cutoff scores for each age window from 3 to 12 ized training and/or additional resources compared to
months that had high prognostic value for later CP diagnoses. the GMA, clinicians should not use any tool in isolation
(63) In those who had documented brain insults, HINE scores for the purpose of predicting or diagnosing CP; rather
could assist with severity prognostication. (63) these tools should be used to help identify at-risk infants
Since then, numerous studies have evaluated the HINE’s and follow the trajectory of motor development while
predictive value in various populations. (61)(64)(65)(66)(67) screening those who may require closer surveillance.
Romeo et al recently demonstrated that 50% of low-risk (51)(75)
preterm infants with a HINE score less than 73 at 12
months’ corrected age had normal neurologic outcomes by Neuroimaging
age 2 years, thus providing more appropriate cutoff scores Although neuroimaging is helpful in early identification
for these patients. (68) The HINE may help assess the se- of CP, 10% to 15% of infants with CP have normal neuro-
verity of CP at 2 years of age in infants with documented imaging; therefore, similar to the other assessment tools
brain insults, and combinations of global and asymmetry mentioned in this review, it should not be used in isola-
scores on the HINE may help categorize hemiplegic CP. tion when making or excluding a diagnosis of CP. (51)(76)
(61)(69)(70) In a systematic review with over 2,400 infants and a CP
prevalence of 9.4%, sequential cUS in the NICU had a
Other Standardized Motor Assessments pooled sensitivity of 74% (95% confidence interval [CI],
Several standardized motor assessments are available, which 63%–83%) and specificity of 92% (95% CI, 81%–96%) to
can be performed in both preterm and term infants and predict CP in both preterm and high-risk term infants, es-
have been studied for their predictive value for CP, namely pecially in cases of grade 3 or 4 IVH, cerebellar injury,
the Alberta Infant Motor Scale (AIMS), the Test of Infant and cystic PVL. (60)(77)(78)(79) Periventricular hemor-
Motor Performance (TIMP), and the DAYC. The AIMS is a rhagic infarction, a more accurate term for grade 4 IVH,
58-item standardized tool that evaluates gross motor develop- confers a high risk for CP, and white matter injury confers
ment from birth until 18 months of age or when indepen- a 20-fold increased odds of developing CP. (80)(81)
dent ambulation is achieved and requires direct observation Evidence to support the routine use of MRI in preterm
of the infant in prone, supine, sitting, and standing posi- infants to predict CP is mixed, with poor sensitivity
tions. (71) The TIMP is a 42-item standardized tool that can (65%–71%) and good to excellent specificity (84%–95%).
be performed as early as 34 weeks’ gestational age until 4 (81)(82)(83) The Choosing Wisely campaign endorsed by
months’ corrected gestational age and requires both direct the American Academy of Pediatrics recommends avoid-
observation and items elicited such as cranial nerve function ing routine screening MRIs at term-equivalent age in pre-
and evaluation of antigravity control. (72) Both evaluations term infants given the lack of data to suggest improved
can take from 20 to 30 minutes to administer, and the prediction of long-term outcomes; however, MRI should
AIMS can be administered over telehealth but the TIMP be considered in infants with HIE, stroke, brain malfor-
should be conducted in person. The TIMP should be admin- mations, PVL, or severe IVH. (84) Notably, the Kidokoro
istered by clinicians such as physical and occupational thera- scoring (MRI scoring system of abnormalities that is spe-
pists in the NICU or early intervention programs who have cific for preterm infants with IVH) performed in preterm
undergone training through workshops and online modules; infants at term-equivalent age is used in Australia and pro-
however, the AIMS has been shown to have good reliability vides strong evidence of predicting outcomes accurately.
between both experienced and novice examiners because (85) Newer imaging techniques and modalities may allow
it relies on direct observation. (71) The DAYC is a more accurate prognostication of diagnosis, topography,

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and severity in the future. (86) Certainly, if CP is suspected, and cytomegalovirus infection, should have a GMA, HINE,
clinicians should consider MRI as part of the diagnostic thorough medical history conducted including review of
evaluation in a term infant without risk factors, for cortical any detectable risk factors for CP or parent-identified con-
or vascular malformations among possible etiologies. (87) cerns, review of imaging, and a standardized motor assess-
ment performed starting at 3 to 4 months’ corrected age; in
Evidence to Support the Combination of Multiple infants older than 5 months, the HINE, MRI, and standard-
Tools ized motor assessments are recommended. (12)(13)(51)
None of the assessment tools described herein (GMA,
HINE, standardized motor assessments, and neuroimag- IMPLEMENTATION OF CLINICAL GUIDELINES
ing) should be used in isolation for detection of CP as
Because of the inconsistent ways in which neurologic ex-
they each offer a complementary construct:
aminations were performed and documented in high-risk
1. The GMA evaluates the quality of spontaneous move- infant follow-up (HRIF) clinics, the neonatal neurodeve-
ments and provides information on neural function and lopmental team at Nationwide Children’s Hospital, which
integrity. has over 5,000 yearly visits, was trained in the HINE with
2. The HINE is a standardized neurologic examination. the help of a Hammersmith trained neurologist and by de-
3. Standardized motor assessments (eg, AIMS, TIMP, and veloping a preparation course work and on-site practice.
physical domain of the DAYC) are tools to evaluate fine (89) Following the implementation of the HINE, which
and gross motor impairment. was administered at the 3- to 4-month, 9- to 12-month,
4. Neuroimaging (eg, brain MRI or cUS) detects brain ab- and 22- to 26-month visits up until 2 years’ corrected age,
normalities or injury associated with CP. the age at diagnosis of CP was reduced from 28 months
to 15.7 months without an increase in the number of new
Serial HINEs between 3 and 24 months’ corrected age diagnoses while maintaining adequate inter-rater reliabil-
and the GMA at 3 to 4 months’ corrected age in infants ity. (89) By successfully learning and implementing the
with newborn-detectable risk factors have shown promise HINE and the GMA into clinical practice at a single site
in predicting CP, especially the combination of absent while standardizing documentation in the electronic medi-
FMs and HINE score of less than 50. (88) The pooled pre- cal record, the team was able to demonstrate a reduction
dictive power of HINE, GMA, and cUS or MRI in high- in age at CP diagnosis, demonstrating the feasibility of us-
risk term and preterm infants has shown sensitivity, spe- ing this tool in clinical practice. (90)
cificity, and positive and negative predictive values greater Following the publication of the clinical guidelines for
than 98% in predicting the development of CP by 2 years
early detection in 2017, single centers started implement-
compared to each tool alone. (76) The caveat in this study,
ing these recommendations, reducing the age at diagnosis
however, was that HINE examiners, GMA readers, and
to 8.5 months in one cohort with 98% of those diagnosed
neuroimaging readers were all experts in the field of CP.
with CP being referred to CP-specific early intervention
programs. (89)(91)(92) The largest implementation study
Use of CP Early Detection Tools in Neonatal
to date included the formation of an Early Detection and
Follow-Up
Implementation (EDI) Network composed of 5 diverse US-
The international clinical practice guidelines published in
based HRIF clinics. The network reduced the age at CP di-
2017 were developed by a multidisciplinary panel of scien-
agnosis using quality improvement methodology and im-
tific and clinical experts in CP and parent stakeholders,
and outlined 12 recommendations based on best evidence- plementation science on a large scale by transitioning to
based assessments with an algorithm for early detection of an earlier visit at 3 to 4 months and incorporating the
CP (Fig). (51) Early detection is feasible and accurate and GMA, HINE, medical history, and standardized motor
can lead to earlier CP-specific interventions whereas an in- function assessment. (93) Within 1 year, the network low-
terim designation of “high risk of CP” should be used if ered the age at diagnosis from 19.5 months’ corrected age
the clinician is concerned but cannot be certain of the di- to 9.5 months’ corrected age with no increase in the num-
agnosis. (51) In general, infants younger than 5 months' ber of CP diagnoses. (93) Recent publications show that
corrected age who have identifiable risks such as the neu- they sustained their change 5 years later, even through the
ral insults previously mentioned, but also others such as addition of new sites and the challenges related to the
intrauterine growth restriction, intrauterine drug exposure, COVID-19 pandemic. (94)

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Figure. Pathway to early detection. A represents the best available evidence pathway per the international clinical guidelines published by Novak et al
in 201751; B is next best if some tools in A are not available. AIMS5Alberta Infant Motor Scale, CP5cerebral palsy, DAYC5Developmental Assessment of
Young Children, GMs5Prechtl Qualitative Assessment of General Movements, HINE5Hammersmith Infant Neurological Examination, IUGR5intrauterine
growth restriction, MAI5Motor Assessment of Infants, NSMDA5Neuro-Sensory Motor Development Assessment, TIMP5Test of Infant Motor Perfor-
mance. (Modified from “Early Recognition of Cerebral Palsy: A Pathway to Referral” published online in 2018. Reprinted with permission from the Cerebral
Palsy Foundation in New York, NY.)

CAREGIVER PERCEPTION OF EARLY DIAGNOSIS there is a missing diagnostic component or a negative result
Population data support the notion that delaying conversations (Table). (94)(97) During a focus group involving caregivers
surrounding even the suspicion of CP can be detrimental to of children with CP describing their experiences surround-
parental well-being. The vast majority of caregivers already ing CP diagnosis and the concept of using a designation
suspect the diagnosis before being told, and in 1 study, more early on, parents expressed that a designation was an accept-
than 40% of caregivers experienced dissatisfaction and resent- able alternative to start these conversations and could be re-
ment about a delayed diagnosis, which correlated with later visited even if a diagnosis was ultimately not made. (98)
depression. (95) On a large scale, the US-based implementa- Globally, clinicians who have shifted their practice toward
tion network found that 90% of parents reported receiving early detection of CP have adopted this designation to pro-
empathy and support at the diagnosis visit. (95) This positive vide a framework for shared decision-making and establish-
perception of early CP diagnosis has been confirmed, with pa- ing a common language between families and high-risk
rents generally wanting more information on the next steps. follow-up clinicians. Importantly, this shift to early detection
(81)(96)(97) Parents of children with CP have stated that ear- has allowed for the study of earlier interventions in children
lier diagnosis or use of a high-risk designation was beneficial with CP even younger than 2 years. The results are promis-
to their family and their child and was a priority in an honest ing, and an increasing pipeline of studies testing new inter-
yet positive conversation with diagnosis-related education and ventional approaches is actively underway. (99)(100)
resources. (97)
To address starting conversations earlier, a consensus CONCLUSIONS
statement was put forth by the EDI network and the Cana- Across NICUs and HRIF clinics around the world, a shift
dian Neonatal Follow-Up Network in 2022 to adopt a “high- toward early detection of CP to drive new early interven-
risk for CP” designation when a diagnosis is suspected but tions has evolved from decades of historical challenges

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Table. Proposed criteria for diagnosis of cerebral palsy (CP) versus high-risk clinical designation.
Basic elements of diagnosis of CP Clinical history consistent with the etiology of CP
Neurologic exam with evidence of impairment
Decrease in motor function on standardized motor assessment
Neuroimaging findings associated with CP (eg, MRI or cUS with evidence of stroke,
HIE, grade 3–4 IVH, hydrocephalus, periventricular leukomalacia)
Positive biomarkers for CP:
 Genetic condition associated with CP
 No underlying progressive disorder
 Hammersmith Infant Neurological Exam scores below threshold for age
 Cramped synchronized and/or absent fidgety movements on the General
Movements Assessment
High risk for CP clinical designation A basic element is missing/an assessment is not performed
Basic element with negative results for predicting later CP but others are positive
First evaluation of child before age of 2 years with clinical concern but no previous
evaluations have demonstrated clear concerns

Adapted from Maitre NL, Byrne R, Duncan A, et al; CP EDI Consensus Group; Canadian Neonatal Follow-up Network. “High-risk for cerebral palsy”
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