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  1. Article ; Online: Clinical practice - latest insights in optimizing the care of children with Down syndrome.

    van Gameren-Oosterom, Helma B M / Weijerman, Michel E / van Wieringen, Hester / de Winter, J Peter / van Wermeskerken, Anne-Marie

    European journal of pediatrics

    2023  Volume 182, Issue 5, Page(s) 2027–2039

    Abstract: An essential part of the care of children with Down syndrome is secondary screening for comorbidity. It is well known that comorbidity frequently occurs in these children. A new update of the Dutch Down syndrome medical guideline was developed to create ... ...

    Abstract An essential part of the care of children with Down syndrome is secondary screening for comorbidity. It is well known that comorbidity frequently occurs in these children. A new update of the Dutch Down syndrome medical guideline was developed to create a sound evidence base for several of these conditions. We present the latest insights and recommendations from this Dutch medical guideline which are based on the most relevant literature currently available and developed with rigorous methodology. The main focus of this revision of the guideline was on obstructive sleep apnea and other airway problems and hematologic disorders, such as transient abnormal myelopoiesis, leukemia, and thyroid disorders. Conclusion: This is a short summary of the latest insights and recommendations from the updated Dutch medical guideline for children with Down syndrome.
    MeSH term(s) Humans ; Child ; Down Syndrome/complications ; Down Syndrome/diagnosis ; Down Syndrome/therapy ; Sleep Apnea, Obstructive/diagnosis ; Sleep Apnea, Obstructive/therapy ; Sleep Apnea, Obstructive/epidemiology ; Comorbidity
    Language English
    Publishing date 2023-03-10
    Publishing country Germany
    Document type Journal Article ; Review
    ZDB-ID 194196-3
    ISSN 1432-1076 ; 0340-6199 ; 0943-9676
    ISSN (online) 1432-1076
    ISSN 0340-6199 ; 0943-9676
    DOI 10.1007/s00431-023-04890-9
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Jeugdgezondheidszorgrichtlijn 'Huidafwijkingen'.

    Deurloo, Jacqueline A / van Gameren-Oosterom, Helma B M / Kamphuis, Mascha

    Nederlands tijdschrift voor geneeskunde

    2012  Volume 156, Issue 46, Page(s) A5445

    Abstract: There is a high incidence of skin disorders; these are also frequently encountered within Youth Healthcare (YHC). Some skin disorders are caused by an underlying disease, syndrome or child abuse. Therefore, detection of these causes in an early stage is ... ...

    Title translation Youth Healthcare guideline 'Skin disorders'.
    Abstract There is a high incidence of skin disorders; these are also frequently encountered within Youth Healthcare (YHC). Some skin disorders are caused by an underlying disease, syndrome or child abuse. Therefore, detection of these causes in an early stage is important. Skin disorders can have a huge psychosocial impact on both child and parents. This is one of the reasons why prevention, detection, diagnosis, treatment, referral, and uniform advice and guidance are of great importance. The YHC Guideline examines counselling and advice, criteria for referral to primary or secondary healthcare, and skincare in general. It also describes the disorders that should be actively detected. The Guideline also looks at specific aspects of dark skins and ethnic diversity, and the impact of skin disorders on general wellbeing. The accompanying web-based tool includes argumentation and opinions from experts on more than 75 skin disorders, including illustrations and decision trees, to aid the drawing up of a treatment plan.
    MeSH term(s) Adolescent ; Child ; Child, Preschool ; Dermatology/standards ; Ethnic Groups ; Female ; Humans ; Infant ; Infant, Newborn ; Male ; Netherlands ; Pediatrics/standards ; Practice Guidelines as Topic ; Skin Diseases/diagnosis ; Skin Diseases/epidemiology ; Skin Diseases/prevention & control
    Language Dutch
    Publishing date 2012
    Publishing country Netherlands
    Document type English Abstract ; Journal Article ; Review
    ZDB-ID 82073-8
    ISSN 1876-8784 ; 0028-2162
    ISSN (online) 1876-8784
    ISSN 0028-2162
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Mainstream and special school attendance among a Dutch cohort of children with Down Syndrome.

    van Wouwe, Jacobus P / van Gameren-Oosterom, Helma B M / Verkerk, Paul H / van Dommelen, Paula / Fekkes, Minne

    PloS one

    2014  Volume 9, Issue 3, Page(s) e91737

    Abstract: Object: To determine the level of mainstream education in a nationwide cohort of adolescents with Down Syndrome (DS), and to find characteristics related to mainstream or special school attendance.: Method: Dutch children with DS born in 1992, 1993 ... ...

    Abstract Object: To determine the level of mainstream education in a nationwide cohort of adolescents with Down Syndrome (DS), and to find characteristics related to mainstream or special school attendance.
    Method: Dutch children with DS born in 1992, 1993 or 1994, were assessed when 16-19 years old. Parents scored school enrolment between the age of 4-18 years, general characteristics and the levels of intellectual disability using the Dutch Social Competence Rating Scale. Associations between disability and years in mainstream school were assessed by ordinal logistic regression, adjusting for sex and parental education.
    Results: We collected data from 170 boys and 152 girls (response 63%); mean age 18.3 years (ranges 16.8-19.9). Intellectual disability was mostly moderate (43%). Most children (74%) entered mainstream education between 4 and 6 years of age. At 13 years 17% was in mainstream school and 7% stayed in up to 16 years. From the age of 8 years onwards the majority was in special education, while 6% never attended school. Girls were more often in mainstream school and stayed in longer. Level of disability was significantly associated with number of years in mainstream education.
    Conclusion: Three out of four Dutch children with DS entered mainstream primary education, however late entry and high dropout are common.
    MeSH term(s) Adolescent ; Child ; Cohort Studies ; Cross-Sectional Studies ; Down Syndrome/epidemiology ; Education of Intellectually Disabled ; Female ; Humans ; Mainstreaming, Education ; Male ; Netherlands/epidemiology ; Parents ; Young Adult
    Language English
    Publishing date 2014-03-17
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ISSN 1932-6203
    ISSN (online) 1932-6203
    DOI 10.1371/journal.pone.0091737
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Management of undescended testis: a decision analysis.

    van den Akker-van Marle, M Elske / Kamphuis, Mascha / van Gameren-Oosterom, Helma B M / Pierik, Frank H / Kievit, Job

    Medical decision making : an international journal of the Society for Medical Decision Making

    2013  Volume 33, Issue 7, Page(s) 906–919

    Abstract: Background: Undescended testis (UDT) or cryptorchidism is the most common genital anomaly seen in boys and can be treated surgically by orchidopexy. The age at which orchidopexy should be performed is controversial for both congenital and acquired UDT.!# ...

    Abstract Background: Undescended testis (UDT) or cryptorchidism is the most common genital anomaly seen in boys and can be treated surgically by orchidopexy. The age at which orchidopexy should be performed is controversial for both congenital and acquired UDT.
    Methods: A decision analysis is performed in which all available knowledge is combined to assess the outcomes of orchidopexy at different ages.
    Results: Without surgery, unilateral congenital UDT and bilateral congenital UDT are associated with average losses in quality-adjusted life-years (QALYs) of 1.53 QALYs (3% discounting 0.66 QALYs) and 5.23 QALYs (1.91 QALYs), respectively. Surgery reduces this QALY loss to on average 0.84 QALYs (0.21 QALYs) for unilateral UDT and 1.66 QALYs (0.40 QALYs) for bilateral UDT. Surgery at detection will lead to the lowest QALY loss of 0.91 (0.34) and 1.73 (0.60) QALYs, respectively, for unilateral and bilateral acquired UDT compared with surgery during puberty and no surgery. No sensitivity analysis is able to change the preferences for these strategies.
    Conclusions: Based on our decision analytic model using societal valuations of health outcomes, surgery for unilateral UDT (both congenital and acquired) yielded the lowest loss in QALYs. Given the modest differences in outcomes, there is room for patient (or parent) preference with respect to the performance and timing of surgery in case of unilateral UDT. For bilateral UDT (both congenital and acquired), orchidopexy at any age provides considerable benefit, in particular through improved fertility. As there is no strong effect of timing, the age at which orchidopexy is performed should be discussed with the parents and the patient. More clinical evidence on issues related to timing may in the future modify these results and hence this advice.
    MeSH term(s) Cryptorchidism/surgery ; Decision Support Techniques ; Humans ; Male ; Probability ; Quality-Adjusted Life Years
    Language English
    Publishing date 2013-10
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 604497-9
    ISSN 1552-681X ; 0272-989X
    ISSN (online) 1552-681X
    ISSN 0272-989X
    DOI 10.1177/0272989X13493145
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Problem behavior of individuals with Down syndrome in a nationwide cohort assessed in late adolescence.

    van Gameren-Oosterom, Helma B M / Fekkes, Minne / van Wouwe, Jacobus P / Detmar, Symone B / Oudesluys-Murphy, Anne Marie / Verkerk, Paul H

    The Journal of pediatrics

    2013  Volume 163, Issue 5, Page(s) 1396–1401

    Abstract: Objective: To assess problem behavior in adolescents with Down syndrome and examine the association with sex and severity of intellectual disability.: Study design: Cross-sectional data of a Dutch nationwide cohort of Down syndrome children aged 16- ... ...

    Abstract Objective: To assess problem behavior in adolescents with Down syndrome and examine the association with sex and severity of intellectual disability.
    Study design: Cross-sectional data of a Dutch nationwide cohort of Down syndrome children aged 16-19 years were collected using a written parental questionnaire. Problem behavior was measured using the Child Behavior Checklist and compared with normative data. The degree of intellectual disability was determined using the Dutch Social competence rating scale.
    Results: The response rate was 62.8% (322/513), and the mean age 18.3 years (SD ± 0.8). The total score for problem behavior was higher in adolescents with Down syndrome than in adolescents without Down syndrome (26.8 vs 16.5; P < .001). Overall, 51% of adolescents with Down syndrome had problem scores in the clinical or borderline range on 1 or more Child Behavior Checklist subscales; this is more than twice as high as adolescents without Down syndrome. Adolescents with Down syndrome had more internalizing problems than their counterparts without Down syndrome (14% and 9%, respectively, in the clinical range); the percentages for externalizing problems were almost equal (7% and 9%, respectively, in the clinical range). The highest problem scores in adolescents with Down syndrome were observed on the social problems and thought problems subscales (large to very large standardized differences). Male sex and/or more severe mental disabilities were associated with more behavioral problems.
    Conclusions: Serious problem behavior is more prevalent in adolescents with Down syndrome. This demonstrates the need for a focus on general behavior improvement and on the detection and treatment of specific psychopathology in individuals with Down syndrome.
    MeSH term(s) Adolescent ; Adolescent Behavior ; Child Behavior Disorders/diagnosis ; Child Behavior Disorders/etiology ; Cohort Studies ; Cross-Sectional Studies ; Down Syndrome/physiopathology ; Female ; Humans ; Intellectual Disability/diagnosis ; Male ; Netherlands ; Regression Analysis ; Social Behavior ; Young Adult
    Language English
    Publishing date 2013-11
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 3102-1
    ISSN 1097-6833 ; 0022-3476
    ISSN (online) 1097-6833
    ISSN 0022-3476
    DOI 10.1016/j.jpeds.2013.06.054
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  6. Article: Problem Behavior of Individuals with Down Syndrome in a Nationwide Cohort Assessed in Late Adolescence

    van Gameren-Oosterom, Helma B.M / Fekkes, Minne / van Wouwe, Jacobus P / Detmar, Symone B / Oudesluys-Murphy, Anne Marie / Verkerk, Paul H

    journal of pediatrics. 2013 Nov., v. 163, no. 5

    2013  

    Abstract: OBJECTIVE: To assess problem behavior in adolescents with Down syndrome and examine the association with sex and severity of intellectual disability. STUDY DESIGN: Cross-sectional data of a Dutch nationwide cohort of Down syndrome children aged 16-19 ... ...

    Abstract OBJECTIVE: To assess problem behavior in adolescents with Down syndrome and examine the association with sex and severity of intellectual disability. STUDY DESIGN: Cross-sectional data of a Dutch nationwide cohort of Down syndrome children aged 16-19 years were collected using a written parental questionnaire. Problem behavior was measured using the Child Behavior Checklist and compared with normative data. The degree of intellectual disability was determined using the Dutch Social competence rating scale. RESULTS: The response rate was 62.8% (322/513), and the mean age 18.3 years (SD ± 0.8). The total score for problem behavior was higher in adolescents with Down syndrome than in adolescents without Down syndrome (26.8 vs 16.5; P < .001). Overall, 51% of adolescents with Down syndrome had problem scores in the clinical or borderline range on 1 or more Child Behavior Checklist subscales; this is more than twice as high as adolescents without Down syndrome. Adolescents with Down syndrome had more internalizing problems than their counterparts without Down syndrome (14% and 9%, respectively, in the clinical range); the percentages for externalizing problems were almost equal (7% and 9%, respectively, in the clinical range). The highest problem scores in adolescents with Down syndrome were observed on the social problems and thought problems subscales (large to very large standardized differences). Male sex and/or more severe mental disabilities were associated with more behavioral problems. CONCLUSIONS: Serious problem behavior is more prevalent in adolescents with Down syndrome. This demonstrates the need for a focus on general behavior improvement and on the detection and treatment of specific psychopathology in individuals with Down syndrome.
    Keywords Down syndrome ; adolescence ; adolescents ; behavior problems ; children ; questionnaires ; social problems
    Language English
    Dates of publication 2013-11
    Size p. 1396-1401.
    Publishing place Mosby, Inc.
    Document type Article
    ZDB-ID 3102-1
    ISSN 1097-6833 ; 0022-3476
    ISSN (online) 1097-6833
    ISSN 0022-3476
    DOI 10.1016/j.jpeds.2013.06.054
    Database NAL-Catalogue (AGRICOLA)

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  7. Article ; Online: Prevalence of overweight in Dutch children with Down syndrome.

    van Gameren-Oosterom, Helma B M / van Dommelen, Paula / Schönbeck, Yvonne / Oudesluys-Murphy, Anne Marie / van Wouwe, Jacobus P / Buitendijk, Simone E

    Pediatrics

    2012  Volume 130, Issue 6, Page(s) e1520–6

    Abstract: Objective: Prevalence of overweight in children is increasing, causing various health problems. This study aims to establish growth references for weight and to assess the prevalence rates of overweight and obesity in a nationwide sample of Dutch ... ...

    Abstract Objective: Prevalence of overweight in children is increasing, causing various health problems. This study aims to establish growth references for weight and to assess the prevalence rates of overweight and obesity in a nationwide sample of Dutch children with Down syndrome (DS), taking into account the influence of comorbidity.
    Methods: In 2009, longitudinal growth data from Dutch children with trisomy 21 who were born after 1982 were retrospectively collected from medical records of 25 Dutch regional specialized DS centers. "Healthy" was defined as not having concomitant disorders or having only a mild congenital heart defect. Weight and BMI references were calculated by using the LMS method, and prevalence rates of overweight and obesity by using cutoff values for BMI as defined by the International Obesity Task Force. Differences in prevalence rates were tested by multilevel logistic regression analyses to adjust for gender and age.
    Results: Growth data of 1596 children with DS were analyzed. Compared with the general Dutch population, healthy children with DS were more often overweight (25.5% vs 13.3% in boys, and 32.0% vs 14.9% in girls) and obese (4.2% vs 1.8%, and 5.1% vs 2.2%, respectively). Prevalence rates of overweight between DS children with or without concomitant disorders did not vary significantly.
    Conclusions: Dutch children with DS have alarmingly high prevalence rates of overweight and obesity during childhood and adolescence. Health care professionals should be aware of the risk of overweight and obesity in children with DS to prevent complications.
    MeSH term(s) Adolescent ; Age Factors ; Body Mass Index ; Child ; Child, Preschool ; Comorbidity ; Cross-Cultural Comparison ; Cross-Sectional Studies ; Down Syndrome/epidemiology ; Female ; Health Surveys ; Heart Defects, Congenital/epidemiology ; Humans ; Hypothyroidism/epidemiology ; Infant ; Male ; Netherlands ; Obesity/epidemiology ; Overweight/epidemiology ; Reference Values ; Risk Factors ; Sex Factors
    Language English
    Publishing date 2012-12
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 207677-9
    ISSN 1098-4275 ; 0031-4005
    ISSN (online) 1098-4275
    ISSN 0031-4005
    DOI 10.1542/peds.2012-0886
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article ; Online: Development, problem behavior, and quality of life in a population based sample of eight-year-old children with Down syndrome.

    van Gameren-Oosterom, Helma B M / Fekkes, Minne / Buitendijk, Simone E / Mohangoo, Ashna D / Bruil, Jeanet / Van Wouwe, Jacobus P

    PloS one

    2011  Volume 6, Issue 7, Page(s) e21879

    Abstract: Objective: Children with Down syndrome (DS) have delayed psychomotor development. We investigated levels of development, problem behavior, and Health-Related Quality of Life (HRQoL) in a population sample of Dutch eight-year-old children with DS. ... ...

    Abstract Objective: Children with Down syndrome (DS) have delayed psychomotor development. We investigated levels of development, problem behavior, and Health-Related Quality of Life (HRQoL) in a population sample of Dutch eight-year-old children with DS. Developmental outcomes were compared with normative data of eight-year-old children from the general population.
    Method: Over a three-year-period all parents with an eight-year-old child with DS were approached by the national parent organization. Developmental skills were assessed by means of the McCarthy Scales of Children's Ability. To measure emotional and behavioral problems we used the Child Behavior Checklist. HRQoL was assessed with the TNO-AZL Children's Quality of Life questionnaire. Analyses of variance were applied to compare groups.
    Results: A total of 337 children participated. Mean developmental age was substantially lower than mean calendar age (3.9 years, SD 0.87 and 8.1 years, SD 0.15 respectively). Mean developmental age was significantly lower among boys than girls (3.6 (SD 0.85) and 4.2 years (SD 0.82) respectively; p<0.001). Compared with the general population, children with DS had more emotional and behavioral problems (p<0.001). However on the anxious/depressed scale, they scored significantly more favorably (p<0.001). Significantly lower HRQoL scores for the scales gross motor skills, autonomy, social functioning and cognitive functioning were found (p-values<0.001). Hardly any differences were observed for the scales physical complaints, positive and negative emotions.
    Conclusion: Eight-year-old children with DS have an average developmental delay of four years, more often have emotional and behavioral problems, and have a less favorable HRQoL compared with children from the general population.
    MeSH term(s) Child ; Child Behavior Disorders/epidemiology ; Child Behavior Disorders/etiology ; Child Behavior Disorders/psychology ; Developmental Disabilities/epidemiology ; Developmental Disabilities/etiology ; Developmental Disabilities/psychology ; Down Syndrome/complications ; Down Syndrome/epidemiology ; Down Syndrome/psychology ; Female ; Humans ; Male ; Quality of Life ; Surveys and Questionnaires
    Language English
    Publishing date 2011-07-21
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ISSN 1932-6203
    ISSN (online) 1932-6203
    DOI 10.1371/journal.pone.0021879
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: Practical and social skills of 16-19-year-olds with Down syndrome: independence still far away.

    Van Gameren-Oosterom, Helma B M / Fekkes, Minne / Reijneveld, Sijmen A / Oudesluys-Murphy, Anne Marie / Verkerk, Paul H / Van Wouwe, Jacobus P / Buitendijk, Simone E

    Research in developmental disabilities

    2013  Volume 34, Issue 12, Page(s) 4599–4607

    Abstract: Survival of children with Down syndrome (DS) has improved considerably, but insight into their level of daily functioning upon entering adulthood is lacking. We collected cross-sectional data from a Dutch nationwide cohort of 322 DS adolescents aged 16- ... ...

    Abstract Survival of children with Down syndrome (DS) has improved considerably, but insight into their level of daily functioning upon entering adulthood is lacking. We collected cross-sectional data from a Dutch nationwide cohort of 322 DS adolescents aged 16-19 (response 62.8%) to assess the degree to which they master various practical and social skills, using the Dutch Social competence rating scale and the Children's Social Behavior Questionnaire. Up to 60% mastered some of the skills required for independent functioning, such as maintaining adequate standards of personal hygiene and preparing breakfast. Less than 10% had achieved basic skills such as basic cooking and paying in a shop. It is difficult for DS people to master all the skills necessary to live independently. Ninety percent of adolescents with DS experience significant problems in social functioning.
    MeSH term(s) Activities of Daily Living ; Adolescent ; Cohort Studies ; Cross-Sectional Studies ; Down Syndrome/physiopathology ; Down Syndrome/psychology ; Female ; Humans ; Independent Living ; Interpersonal Relations ; Male ; Social Adjustment ; Social Behavior ; Surveys and Questionnaires ; Young Adult
    Language English
    Publishing date 2013-12
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 639175-8
    ISSN 1873-3379 ; 0891-4222
    ISSN (online) 1873-3379
    ISSN 0891-4222
    DOI 10.1016/j.ridd.2013.09.041
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  10. Article ; Online: Healthy growth in children with Down syndrome.

    Van Gameren-Oosterom, Helma B M / Van Dommelen, Paula / Oudesluys-Murphy, Anne Marie / Buitendijk, Simone E / Van Buuren, Stef / Van Wouwe, Jacobus P

    PloS one

    2012  Volume 7, Issue 2, Page(s) e31079

    Abstract: Objective: To provide cross-sectional height and head circumference (HC) references for healthy Dutch children with Down syndrome (DS), while considering the influence of concomitant disorders on their growth, and to compare growth between children with ...

    Abstract Objective: To provide cross-sectional height and head circumference (HC) references for healthy Dutch children with Down syndrome (DS), while considering the influence of concomitant disorders on their growth, and to compare growth between children with DS and children from the general population.
    Study design: Longitudinal growth and medical data were retrospectively collected from medical records in 25 of the 30 regional hospital-based outpatient clinics for children with DS in The Netherlands. Children with Trisomy 21 karyotype of Dutch descent born after 1982 were included. The LMS method was applied to fit growth references.
    Results: We enrolled 1,596 children, and collected 10,558 measurements for height and 1,778 for HC. Children with DS without concomitant disorders (otherwise healthy children) and those suffering only from mild congenital heart defects showed similar growth patterns. The established growth charts, based on all measurements of these two groups, demonstrate the three age periods when height differences between children with and without DS increase: during pregnancy, during the first three years of life, and during puberty. This growth pattern results in a mean final height of 163.4 cm in boys and 151.8 cm in girls (-2.9 standard deviation (SD) and -3.0 SD on general Dutch charts, respectively). Mean HC (0 to 15 months) was 2 SD less than in the general Dutch population. The charts are available at www.tno.nl/growth.
    Conclusions: Height and HC references showed that growth retardation in otherwise healthy children with DS meanly occurs in three critical periods of growth, resulting in shorter final stature and smaller HC than the general Dutch population shows. With these references, health care professionals can optimize their preventive care: monitoring growth of individual children with DS optimal, so that growth retarding comorbidities can be identified early, and focusing on the critical age periods to establish ways to optimize growth.
    MeSH term(s) Adolescent ; Adult ; Body Height/physiology ; Cephalometry ; Child ; Child, Preschool ; Down Syndrome/physiopathology ; Female ; Growth and Development ; Health ; Humans ; Infant ; Infant, Newborn ; Male ; Netherlands ; Reference Standards ; Young Adult
    Language English
    Publishing date 2012-02-17
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ISSN 1932-6203
    ISSN (online) 1932-6203
    DOI 10.1371/journal.pone.0031079
    Database MEDical Literature Analysis and Retrieval System OnLINE

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