About the Screening

1. Why are you studying my child's growth and development?
2. What is the Upstate KIDS Infant Development Screening Program?
3. Why are you surveying mothers? Why not do laboratory studies instead? 
4. What are developmental milestones?
5. When is it considered normal for my baby to reach the developmental milestones you are screening for?
6. How did you decide what topics to study? Are these things known to cause growth and/or developmental delays?
7. What is the New York State Early Intervention Program?
8. What is corrected gestational age?
9. Why is corrected gestational age used by the Upstate KIDS Program?
10. How is corrected gestational age calculated? 
11. What is the M-CHAT?
12. What is the Ages & Stages Questionnaire?

1. Why are you studying my child's growth and development? 

An estimated 12 to 16 percent of U.S. children have developmental delays or behavioral problems. Currently, little is known about what causes these delays in normal development. Research also has shown that early intervention improves a child's long-term scholastic and behavioral outcomes. We hope the information we gather from this program will bring us closer to  understanding the causes of growth and/or developmental delays, and help us refer families to early intervention services in a timely manner. TOP

2. What is the Upstate KIDS Infant Development Screening Program? 

A select group of women who recently gave birth in New York State will be enrolled in this screening program.

· The three main collaborators of this program include: the New York State Health Department, the University at Albany School of Public Health, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

· Approximately 6,600 women and their children will be enrolled and asked to participate for up to three years of follow-up.

· We ask participants to complete three types of tasks during their follow-up:

o Written surveys or questionnaires (which will include information on the mother's pregnancy, medical history, reproductive history, and lifestyle factors)

o The "Ages & Stages Questionnaires" or ASQs

o Short periodic surveys of their child's development

o With your permission, we will collect information from your child's pediatrician on any major diagnoses if your child develops any major health conditions.TOP

3. Why are you surveying mothers? Why not do laboratory studies instead? 

There is no way to re-create the many events and exposures that happen during pregnancy or during early childhood development in a lab--only mothers can give us this information. TOP

4. What are developmental milestones?

Developmental milestones are skills or tasks that children can complete or learn to complete within a particular age range. Milestones are used to ensure children are developing normally. The age when a normally developing child achieves each milestone can vary a great deal; each child is unique. TOP

5. When is it considered normal for my baby to reach the developmental milestones you are screening for?

Not all babies will grow and develop at the same time, or at the same pace. Remember that this is normal. However, scientists have agreed on an average time period when most children should have reached such milestones.

Windows of Milestone Achievement:**
Sitting without support: 3 to 9 months old
Standing with assistance: 4 to 11 months old
Hands & knees crawling: 5 to 14 months old
Walking with assistance: 6 to 14 months old
Standing alone 7 to 17 months old
Walking alone 8 to 18 months old
**These ‘Windows of Achievement’ were reported by the World Health Organization in 2006. TOP

6. How did you decide what topics to study? Are these things known to cause growth and/or developmental delays? 

The topics we are investigating are new, or have been topics of interest by parents, the medical field, or scientists. TOP

7. What is the New York State Early Intervention Program?

The NYS EIP is a program provided by the New York State Department of Health for infants and toddlers with disabilities. The program offers many services, free of charge to families, including: education, home visits, counseling, occupational/physical/speech therapy, nursing services, vision services and service coordination. TOP

8. What is corrected gestational age?

For babies that are born early, or before 37 weeks, corrected gestational age may be calculated for participation in the Upstate KIDS Program. Corrected gestational age will account for the period of prematurity of your baby. If your baby is born early, corrected gestational age will account for differences that may be noticed in development up to age two. TOP

9. Why is corrected gestational age used by the Upstate KIDS Program?

Upstate KIDS records corrected gestational age to ensure that premature babies have just as much time as full-term babies to catch up on growing. We will use the corrected gestational age as the age at which to track developmental milestones and growth. TOP

10. How is corrected gestational age calculated?

Corrected gestational age is calculated from the due date and actual birth date of your baby. Upstate KIDS Program Specialists will record your due date and the actual birth date of your baby to identify if a corrected gestational age will be used. We will use your premature baby’s final due date as the date of birth. Your baby’s age is then calculated by the amount of time that would have passed had the baby been born full term.

An example:

Your due date is March 22nd. Your baby was born early, on January 22nd. If today is May 22nd, your baby’s calendar age would be 4 months old; however the corrected gestational age would be 2 months old. We would not count the 2 months of life that your baby used to catch up to other full-term babies. On May 22nd, your baby would be developmentally comparable to other full-term babies, who are also 2 months old. This makes an even and equal starting point for tracking all babies' growth and development. TOP

11. What is the M-CHAT?

The M-CHAT, or the Modified Checklist for Autism in Toddlers was developed to test for Autism Spectrum Disorders (ASD). The questionnaire is to be completed by parents/guardians when the toddler is between 16 and 30 months old. The M-CHAT is a widely used tool by health care providers since its copyright in 1999. The M-CHAT is not a definitive tool for diagnosing an ASD in a child, and further, more extensive evaluation is always required before a diagnosis can be made. For this reason, do not withhold from answering honestly in fear of undesirable results. At Upstate KIDS, parents will be notified if the M-CHAT reveals a child may need additional follow-up. Families participating in Upstate KIDS will be asked to complete the M-CHAT when their child is about 18 months old, and again at about 24 months of age. TOP

12. What is the Ages & Stages Questionnaire?

The Ages & Stages Questionnaire, or ASQ, is a screening tool that is used to identify children who are in need of further developmental assessment. The ASQ is not a diagnostic tool in itself. The results from the screening will identify children and infants that may need additional testing and screening from health care providers. The ASQ has been validated, and is available in both English and Spanish. Each questionnaire is to be administered by the parent in an interactive way with the child. Screens are designed to be completed at specific ages, for example 4, 8, 12, 18, 24, 30 and 36 months of age. Five developmental areas are covered in each ASQ, and all scoring will be completed by the Upstate KIDS Program. TOP