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ISSUE 2

VOLUME 1

SPRING 2 0 1 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 that so many participants are continuing to take part in the Study across our 10 Study Locations (SLs). Once we get in touch with all participants in the region, we hope that every participant who originally signed up for the Study stays in the Study. 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 their commitment to improving 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 Units. 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 units” – 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 unit, 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, attended events, signed up to receive this newsletter, 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, please read the “Community Outreach and Engagement” section on page 3.

Another piece of exciting news is the development of the first iPad application 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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I N THIS I SSUE:  RCEAC, NCS G OES M OBILE, S TAFF S POTLIGHT .................... …………………….…. 2  COMMUNITY O UTREACH, A UTISM AWARENESS M ONTH…………………………………………….. 3  CALENDAR OF E VENTS, A ND THE COMMUNITY W ANTS TO K NOW …………………………….....4

Richard C. Gershon, PhD Co-Principal Investigator, NCS South Region Vice Chair for Research, Associate Professor 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 to vision, for both children and their parents.


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SPOTLIGHT Field data collectors are important members of the NCS South Region Team. They are the “face of the Study” to participant families and community members. We would like to introduce our four NCS South Region data collectors from Harris County, TX. They have been successfully building trust and positive relationships with participants.

Local Leadership is Key to Effective Community Engagement The NCS South Region would like to welcome three new members to the RCEAC: Nicole Ortega from Bexar County, TX, Dr. Juan Olivares from Harris County, TX and Barbara LeBlanc from Orleans Parish, LA.

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he Regional Community Engagement Advisory Committee (RCEAC) is an important part of the NCS. Each person that serves on this committee brings a unique leadership quality that connects the Study to communities and provides important support. 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.

A special thanks goes to Kerry Dunlavey, RN in Baker County, FL who helped us organize and hold the first “NCS Mobile Unit Open House,” and to Judie Miguelina Benitez joined the NCS Forte-Huff in Lamar County, TX for her work with South Region Team in 2013 and currently works with 70 participants. our “Be a Healthy Superhero” coloring contest. Ms. Huff helped organize the participation of children in Miguelina is from the Dominican four schools in the Paris Independent School District. 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, The NCS South Region Team is using vans to serve as Mathematics Policy Research, and mobile offices for participants when they have an inthe Centers for Disease Control person Study visit. These fully equipped vans are very (CDC). At the CDC she worked on a unique and will bring a comfortable and convenient study titled Preventing Violence data collection experience to where participants live, during Pregnancy. Miguelina work and play. We have both large continues her volunteer work and small van models. Both models helping women and children in were designed with NCS crisis. participants in mind.

The success of both projects could not have been realized without RCEAC support. The Communications Team has many upcoming events in 2014 and will be reaching out to RCEAC members in other Study Locations their help and support. We are thankful to the RCEAC for their continued commitment.

Miguelina Benitez, BA

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

The NCS Goes Mobile

The second, smaller van is a Ford Transit. This van has the same freezers and refrigerators for storing specimens and samples as the larger model. The Ford Transit van 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 smaller 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 2500. 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 distractions for holding interviews. There is an area to sit comfortably The data collection mobile units will Janet Gaetje, BA during the visit as well as a be arriving at their Study Locations bathroom. The Sprinter van also has over the next few months. The first Baker County Data Collectors, Shelly van arrived in Baker County, FL, an area for taking body Prior to joining the NCS South Crawford and Lori Hodges, showing where a “Mobile Unit Open House” Region Team in August 2013, Janet measurements like height, weight the new Sprinter 2500 van. and blood pressure and for was held on January 13, 2014. It Gaetje worked as a social worker collecting biological specimens was a huge success! Participants, and, more recently, as a data the media and the community were collector for the NCS Harris County such as blood or urine. Field data invited. As part of the open house, the NCS South Study Center. Janet enjoys volunteer collectors have enough room to process and prepare work with animals and giving her specimens for shipment. The van has freezers and Region Team presented a Study update to the Healthy time at her local church gathering refrigerators for storage of specimens and samples and Baker coalition. A crowd of approximately 30 people books and clothing for needy is secure with a modern locking system. The Sprinter stayed after the presentation and our two local data families. She has been married for 8 2500 van will be used in Baker County, FL, Benton collectors led tours of the Sprinter 2500 van. Check out years and has a 4 year old daughter. County, AR, Davidson County, TN, Valencia County, your Study Location Facebook page to learn where our NM, and Bexar and Harris Counties, TX. NCS mobile units are headed next.

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SPOTLIGHT

April — 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 Denita Roberson, BS spectrum.” Autism is estimated to affect 1 out of every 68 children in Denita graduated from Sam Houston the United States. Boys are four times more likely to be on the State University where she studied autism spectrum. Children with Health and Biology with an autism often have difficulties in emphasis on Pre-Medicine. Before joining the NCS, she worked as a social situations and with Behavioral Therapist for individuals communication. They also can with autism and other developmental repeat certain behaviors over and disabilities. Denita is happy to be a over again. part of research that may provide information about different types of Autism is a complex childhood diseases. She also enjoys neurodevelopmental disorder. music and the arts. 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:

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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

No babbling or pointing by age one No single words by 16 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.

R ECENT E VENTS March 15: Orleans Parish, LA EarthFest at the Audubon Zoo April 1: Baldwin County, GA Field Office Open House April 3: Davidson County, TN Incredible Baby Shower at the TSU Gentry Center

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

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uring the past few months, the South Region Communications, Community Outreach and Engagement Team (CCOE) has been hard at work across the south region. In January 2014, the CCOE Team participated in the Healthy Baker Coalition meeting in Baker County, FL which was followed by our first Data Collection Mobile Unit Open House. Baker County is the first location in the south region to get an NCS Data Collection Mobile Unit. Baker County data collectors led tours of the van, highlighting all the features that will make Study visits more convenient for families.

April 17: Valencia County, NM Los For the past several months, we worked with the Paris Lunas Health and Wellness Fair

Presentation of certificates at Givens Elementary School in Lamar County, TX. Independent School District in Lamar County, TX for the “Be a Healthy Superhero” calendar coloring 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 all children. 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, each school received a gift card for art supplies, a certificate for the principal, and certificates for each calendar winner. Copies of the calendars were given to the local Parent Teacher Associations as fundraisers in each of the four schools.

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May 2014 Sun

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Thu Teen Movie at Twin Lakes Library System

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Jazz Performances by local “Grease” Spring Musical at high school and middle BHS school and the GC Jazz Band.

Georgia College Sound Sculptures 9: Electronic Music Concert

“Grease” Spring Musical at BHS

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“Broadway and Beyond” Milledgeville Singers Guild Concert at First United Methodist Church, Log Cabin Road

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10 3rd Annual Run with the Big Dogs 5K in Gray, GA

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17 Grand Opening of Phase 2 of Oconee River Greenway Expansion

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Summer Reading Club Singups Start at Twin Lakes Library Sytem

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Milledgeville Old Capital Triathlon

2nd Annual Salute to Our Troops 5K at the Oconee River Greenway

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Teen Movie at Twin Lakes Library System

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24 3rd Annual Lt. Col. (Ret.) Melvin T. Ingram Memorial 5k Run/Walk

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Teen Movie at Twin Lakes Library System

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 into 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, you can decide not to do some parts of the Study and still continue to take part. At each visit, your data collector 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 data collector 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 some visits, we may ask for your permission to collect blood, hair or saliva, also called specimens, from your child. Before data collectors ask for any specimens, they will explain what is needed, how much, and how they will be collected. 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


NCS South Region Spring 2014 Newsletter Baldwin County