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ISSUE 2

VOLUME 1

SPRING 2 01 4

Autism Awareness

South Region

Your Child. Your Community. Your Country. Children Everywhere.

The National Children’s Study Reaches Milestone

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he National Children’s Study (NCS) South Region Team is pleased to let you know we are well on our way to achieving our goal number of participants continuing to take part in the Study across our 10 Study Locations (SLs). Once we get in touch with every participant, we hope to reach beyond this goal! Our data collection team has been working hard for the past 15 months to find and speak with every NCS family. The fact that most participants decided to continue in the Study shows the commitment that these families are making to improve children’s health and well-being for generations to come.

We hinted in our Fall 2013 newsletter that the NCS South Region was about to introduce something big in 2014. In this issue, we are proud to announce the arrival of our NCS South Region Data Collection Mobile Vans. While three SLs have a centrally located field office, participants in other SLs often cannot easily travel to an office to complete a Study visit. For these locations, we are introducing “mobile offices” – a complete office in a van capable of traveling to a location closer to participants’ homes. To find out if your location is getting a mobile van, a field office or both, please read the “NCS Goes Mobile” section on page 2.

The NCS South Region Team could have not reached this goal without the help of community partners who continue to support the Study. We would like to thank everyone who invited us to speak at their organization or attended a community event during the past year. Thank you to those who displayed our flyers, liked our Facebook page(s), followed us on Twitter and helped spread the word about the NCS in your communities. There is more to come! We are excited about many upcoming community events. To learn more about these events and find out where we will be next, please read the “Community Outreach and Engagement” section on page 3.

Another piece of exciting news is the development of the first iPad app for the NCS by the South Region Team. The section below briefly discusses the latest progress on this front. We hope you find this newsletter helpful and look forward to working with many of you in the year ahead.

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IN THIS ISSUE:  RCEAC, NCS GOES MOBILE, STAFF SPOTLIGHT .................... …………………….….2  COMMUNITY OUTREACH, RCEAC M EMBER INTERVIEW , AUTISM AWARENESS………………..3  CALENDAR OF EVENTS, AND THE COMMUNITY W ANTS TO KNOW ………………………………....4

Richard C. Gershon, PhD Co-Principal Investigator, NCS South Region Vice Chair for Research, Associate Professor in Medical Social Sciences and Preventive Medicine-Health and Biomedical Informatics Northwestern University

iPad Applications Measure Early Cognition and are Fun for Kids!

n January 2014, the NCS South Region Team completed the first version of four new iPad applications (apps). These apps will be used by the NCS to measure cognition (the ability to process thoughts) in young children. While using the iPad apps, children are asked to find and touch shapes, pictures and colors on the iPad screen. The apps measure if children can sort pictures, recognize patterns, and identify words with pictures. Using these apps over a few years will allow the NCS to observe children’s cognition as they grow. This is an important part of children’s health and development. The national NCS team is currently reviewing the first version. This app should be in the field later this year.

Source: http://flic.kr/ps/Q7Hav

The NCS South Region is leading a team of researchers who are developing iPad based tests of everything from vocabulary ability to vision, for both children and their parents.


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SPOTLIGHT

Local Leadership is Key to Effective Community Engagement

Field data collectors are important members of the NCS The NCS South Region would like to welcome two new members to the RCEAC: Nicole South Region Team. They are Ortega from Bexar County, TX and Dr. Juan Olivares from Harris County, TX the “face of the Study” to participant families and The success of both projects could not have been he Regional Community Engagement community members. We would realized without RCEAC support. The Advisory Committee (RCEAC) is an like to introduce our four data Communications Team has many upcoming events in important part of the NCS. Each person collectors from Harris County, 2014 and will be reaching out to RCEAC members in that serves on this committee brings a TX. They have been successfully other Study Locations for their help and support. We special leadership quality that connects the Study to building trust and positive are thankful to the RCEAC for their continued their communities and provides important support. relationships with participants. commitment. Over the last few months, the Communications Team has relied on members of the RCEAC for planning and holding community events. Community events increase awareness of the Study and encourage participants to stay in the NCS.

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Miguelina Benitez, BA

Miguelina joined the NCS South Region Team in 2013 and currently works with 70 participants. Miguelina is from the Dominican Republic and speaks both English and Spanish. Previously, Miguelina helped adult and child survivors of domestic and sexual violence. She has research experience at Westat, Mathematics Policy Research, and the Centers for Disease Control (CDC). At the CDC she worked on a study titled Preventing Violence during Pregnancy. Miguelina continues her volunteer work helping women and children in crisis.

Janet Gaetje, BA

Prior to joining the South Region Team in August 2013, Janet worked as a social worker. She had prior experience with the NCS before joining the South Region Team as she was a data collector for five years with the NCS Harris County Study Center. Janet enjoys volunteer work with animals and giving her time at her local church gathering books and clothing for needy families. She has been married for 8 years and has a 4 year old daughter.

A special thanks goes to Kerry Dunlavey, RN in Baker County, FL who helped us organize and hold the first “NCS Mobile Van Open House,” and to Judie Forte-Huff in Lamar County, TX for her work with our “Be a Healthy Superhero” coloring contest. Ms. Huff helped organize the participation of children in four schools in the Paris Independent School District.

Watch an interview with RCEAC member, Zonzie McLaurin, on the Hinds County Facebook Page: facebook.com/NCSHindsCo

The NCS Goes Mobile

The NCS South Region Team is using vans to serve as mobile offices for participants when they have an inperson Study visit. These fully equipped vans are very unique and will bring a comfortable and convenient data collection experience to where participants live, work and play. We have both large and small mobile van models. Both models were designed with NCS participants in mind.

The second, smaller van is a Ford Transit. This van has the same freezers and refrigerators for storing specimens and samples. The Ford Transit will be used in Study Locations that have field offices where participants can come for appointments, except Orleans Parish, which does not have an office. Orleans Parish has a smaller number of participants and the mobile van will help our data collector stay better connected. The other locations that will be receiving this van model are Baldwin County, GA, Hinds County, MS and Lamar County, TX.

The larger van is the Sprinter 3500. This van will be used in Study Locations that do not have a field office. This van provides a quiet environment that is free from The data collection mobile vans will distractions for holding interviews. be arriving at their Study Locations There is an area to sit comfortably over the next few months. The first during the visit as well as a van arrived in Baker County, FL, bathroom. The van also has an area for taking body measurements like Baker County Data Collectors, Shelly  where a “Van Open House” was Crawford and Lori Hodges, showing  held on January 13, 2014. It was a height, weight and blood pressure the new Sprinter 3500 van.  huge success! Participants, the and for collecting biological media, and the community were specimens such as blood or urine. invited. As part of the open house, Field data collectors have enough the NCS South Region Team presented a Study update room to process and prepare specimens for shipment. to the Healthy Baker coalition. A crowd of The van has freezers and refrigerators for storage of approximately 30 people stayed after the presentation specimens and samples. The van is completely secure and our two local data collectors led tours of the with a modern locking system. The Sprinter 3500 van Sprinter 3500 mobile van. Check out your Study will be used in Baker County, FL, Benton County, AR, Location Facebook page to learn where our NCS Davidson County, TN, Valencia County, NM, and mobile vans are headed next. Bexar and Harris Counties, TX.

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SPOTLIGHT

Denita Roberson, BS

Denita graduated from Sam Houston State University where she studied Health and Biology with an emphasis on PreMedicine. Before joining the NCS, she worked as a Behavioral Therapist for individuals with autism and other developmental disabilities. Denita is happy to be a part of research that may provide information about different types of childhood diseases. She also enjoys music and the arts.

April is National Autism Awareness Month

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s you know, the NCS is interested in learning more about many childhood conditions, including autism. Autism is not a single condition but usually refers to a number of disorders said to be on an autism spectrum. Autism is estimated to affect 1 out of every 88 children in the United States. Boys are four times more likely to be on the autism spectrum. Children with autism often have difficulties in social situations and with communication. They also can repeat certain behaviors over and over again. Autism is a complex neurodevelopmental disorder. Ongoing research continues to look

for the causes. Although no single cause has been identified, scientists have discovered a number of genes associated with autism. Most of these genes are not sufficient to cause autism alone, which makes experts believe other factors such as environment and early brain development play a role.

healthcare providers can make an individualized plan to address each child’s specific needs. A few early symptoms that require evaluation by an expert include:

 No babbling or pointing by age one

 No single words by 16 There is no cure for autism, however, therapies and behavioral interventions which target specific symptoms can provide much help. Significant improvements in autism symptoms are most often seen when children get intensive help early on. Most healthcare providers agree that the earlier a child is diagnosed and begins treatment, the better. Once diagnosed, children, parents and

months or two word phrases by age two  Poor eye contact Autism is a serious condition which affects the individual throughout their lifetime. Research is needed to continue to understand and find causes as well as design and improve treatments for those who have autism.

Community Outreach Building relationships with participants and community leaders

Melia J. Wichmann, BA

Melia is a graduate of Texas A&M University and worked for the University of Texas MD Anderson Cancer Center as an administrative assistant to more than 40 statistical analysts. She was responsible for assigning research studies for statistical review. She joined the NCS Vanguard Study through the Baylor College of Medicine in Houston, TX in August 2012. Melia has been married for 32 years and has one son.

U PCOMING E VENTS April 1: Baldwin County Field Office Open House April 3: Davidson County Incredible Baby Shower at the TSU Gentry Center April 11-12: Harris County Mom Expo

Baker County, FL community member signs up to receive the NCS South Region newsletter via email.

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n January 2014, the NCS South Region Team participated in the Healthy Baker Coalition meeting. Immediately following the meeting, our first Data Collection Mobile Van Open House was held. Baker County is the first location in the south region to get an NCS Data Collection Mobile Van. Baker County data collectors led tours of the vans, highlighting all the van features that will make study visits more convenient for families.

For the past several months, we worked with the Paris April 24: Benton County Van Open Independent School District in Lamar County, Texas for the Be a Healthy Superhero Calendar coloring House

Presentation of certificates at Givens School in Lamar County, TX.

contest. The contest was created to celebrate the Lamar County families currently taking part in the NCS. These NCS families are making a difference in children’s health, making them “Healthy Superheroes” to children for generations to come. Hundreds of local children aged Pre-K to 5th grade turned in drawings of healthy superheroes. Thirty-nine drawings were chosen for the 2014 calendar. In February, the four schools received a $75 gift card for art supplies, a certificate for the principal, and certificates for each calendar winner. Copies of the calendars were given to the Parent Teacher Associations as fundraisers in each of the four schools.

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Come Visit the NCS at the Spring Break Baldwin County Field Office Open House 105 Fieldstone Drive, Suite 105 in Milledgeville

Spring Break

Spring Break

National D.A.R.E Day

Health Check/Biometric Screening Place: 153 Dolly Street Gray, GA 31032 Time: 9:00-11:00am

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Creekside Elementary Musical Time: 7:00pm

Creekside Elementary Musical Time: 7:00pm

27th Annual Baldwin County Strawberry Festival Time 9:00-5:00 Math Mania Place: Eagle Ridge Elementary Time: 9:00am-12:00pm

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27th Annual Baldwin County CRCT Testing CRCT Testing Strawberry Festival 19th Annual Chamber Gold Classic Time 9:00-5:00 Place: Milledgeville Country Club National Library Week Time: 1:00pm

CRCT Testing

CRCT Testing

CRCT Testing

Greenway Farmers Market Place: Oconee River Greenway Time: 9:00am-Noon

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Easter

CRCT Testing

CRCT Testing

CRCT Testing

CRCT Testing

CRCT Testing

Greenway Farmers Market Place: Oconee River Greenway Time: 9:00am-Noon

Communities in Schools Concert Time: 7:00pm Good Friday

Moonlight on the Capitol: “Moonlight & Magnolias” Place: The Old Capitol Time: 7:00-10:00pm

Earth Day

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What the Community and Participants Want to Know Remind me of Study goals. What is the NCS all about and what do you hope to learn from my involvement? Participating in the NCS is a unique opportunity to be a part of a nationwide health effort. The National Children's Study (NCS) is the largest long-term children's health study ever conducted in the US with the goal of learning more about children's health. The NCS follows children from birth or before birth to 21 years of age. The NCS will look at important health issues to see if there are links between children’s environments and their health. By studying children’s development from pregnancy through infancy, childhood, and early adulthood, the Study hopes to further understanding of what makes children healthy, what makes them sick, and what keeps them safe.

Your Child. Your Community. Your Country. Children Everywhere.

Can I still opt-out of things I don’t want to do? Yes, at each visit, your data collector (DC) will explain what we are doing and ask your permission. We will give you a visit information sheet that describes everything that will happen during the visit. If there are questions you do not want to answer, you can skip them and still be in the Study. In addition to answering questions and filling out forms, your DC may take your child’s body measurements like height, weight and blood pressure. We may also ask for your permission to look at your child’s health information and medical records during the time of the Study. During some visits, we may ask for your permission to collect specimens from your child such as blood, hair or saliva. Before data collectors ask for any specimens, they will explain what we want, how much, and how they will collect them. You can always opt-out of things you do not want to do. We value your continued participation in the Study, and we are only a phone call or email away to answer any additional questions you may have.

(877) 749-0333 Community Inbox: NCSSouthROCoperations@northwestern.edu Participant Inbox: NCSsouth@ncsoperations.org www.nationalchildrensstudy.gov 4


National Children's Study South Region Spring 2014 Newsletter