Appendix_Y_Participant_Newsletter_example

Studyto
Explore
Early
Development

WELCOME to the second edition of
the SEED Newsletter!
SEED – (the Study to Explore Early Development) is going very well. We
have over 2000 families who have agreed to be a part of the study so far.

In this second edition of the newsletter, we will talk about what to look for in how
your child develops. Of course, we will also give you more information on SEED!
This is a semi-annual newsletter of
the CDC-funded Study to Explore
Early Development. The purpose of
this newsletter is to inform the public
of the study’s progress.

WINTER 2010
Issue 2

Inside this issue
SEED Q & A

2

Data Collections Corner 2
Georgia SEED

3

Site Snapshot

4

SEED Highlights

4

Here we go…

Child Development
Growth is physical (weight gain and
getting taller), but it is also how a child
learns, how they play, how they talk and
how they get along with other people.
Every child develops at their own rate.
BUT, there are clues to what you can
expect to see at different ages (See Box
on page 2). Your child may develop in a
different way. Ask your primary doctor
or nurse practitioner what you should
expect.
The earlier that you can do something
about a delay or change in your child’s
development, the better. Treatment(s)
should be started as early as possible
to help your child develop the best he/
she can. There are no blood tests to
tell you if your child’s development is
right for his/her age. You and your
primary health care provider should
work together to watch how your child
develops. If you think there is a problem
with how your child is developing, DO
NOT WAIT, talk about it, and ask
questions. If there is a problem, it is
very important to get your child help as
soon as possible. A developmental delay
(development that is slow) might make
it harder for your child to learn when
they start school. Recent surveys have
found that in the United States, many
(13%) of children have developmental
delay or behavioral problems (http://
www.cdc.gov/ncbddd/dd/ddsurv.htm).
• Visit the Centers for Disease Control
and Prevention (CDC) website

for links to information on child
development and early actions at
www.cdc.gov/actearly.
• Learn more about developmental
disabilities at http://www.cdc.gov/
ncbddd/dd/default.htm.
Your child’s physical growth, emotional
development and social relationships are
all part of child development.
Eating the right foods, getting enough
exercise, rest and sleep each day are
very important for your child’s health
and development. Don’t forget to laugh,
play, read and sing with your child.
Giving your child a safe home and
taking the time to talk, watch TV, play
and listen to music with him/her can
make a big difference in how he/she
grows and develops.
Another part of your child’s development
is their safety. Protecting your child
is a part of being a parent. No parent
wants to see their child harmed for any
reason. Burns, falls and motor vehicle
injuries, are some of the most common
reasons for a child’s injury or death in
the United States.
• Learn more on what you can do to
help protect your child, talk with
your primary healthcare provider
and visit http://www.cdc.gov/
safechild/ for more information.
You are part of keeping your child safe.
(See table on page 2)

By the end of 7 months, many
children are able to:
•
•
•
•

turn head when name is called
smile back at another person
respond to sound with sounds
enjoy social play (such as peek-a-boo)

By the end of 1 year (12 months),
many children are able to:
• use simple gestures (waving “bye-bye”)
• make sounds such as “ma” and “da”
• imitate actions in their play (clap when you
clap)
• respond when told “no”

By the end of 11/2 years (18
months), many children are able to:
• do simple pretend play (“talk” on a toy
phone)
• point to interesting objects
• look at object when you point at it and tell
them to “look!”*
• use several single words unprompted

By the end of 2 years (24 months),
many children are able to:
•
•
•
•

use 2- to 4-word phrases
follow simple instructions
become more interested in other children
point to object or picture when named

By the end of 3 years (36 months),
many children are able to:
• show affection for playmates
• use 4- to 5-word sentences
• imitate adults and playmates (run when
other children run)
• play make-believe with dolls, animals, and
people (“feed” a teddy bear)

By the end of 4 years (48 months),
many children are able to:
• use 5- to 6-word sentences
• follow 3-step commands (“Get dressed.
Comb your hair, and
• wash your face.”)
• cooperate with other children

SEED Questions and Answers
1)How long is SEED? How long
will my family be involved?
How long you are in SEED depends on
how fast you go through each step.
It usually takes 1 – 2 weeks to fill out
all the forms and do the telephone
interviews. After the forms are done,
you will be scheduled for a clinic visit.
After the clinic visit you will be asked
to fill in the diet and stool diaries.
Most families finish everything in
about 10 hours over 2 months.
2)Do I have to send stool back to
the study group?
No. The diet record and stool diary are
filled in by you. We want you to write
down everything your child eats for 3
days. We want you to look each time

your child has a stool and write down
what it looks like. You only need to
send in what you write down on the
form we give you.
3)What if I don’t remember my
child’s early development?
Answer each question as best
you can with as much as you
can remember.
Your baby book
(if you used one)
might help you
remember. Don’t
worry if you don’t
remember every date
and every medicine.
Any information is a
big help.

4)I like helping with studies like
this, are there other studies I can
help with?
The SEED researchers or study staff
located the closest to you can help to
answer this question.

Data Collections Corner: Diet and Stool Diaries
The diet and stool records are an
important part of SEED. We are going
to use them to look at how children
eat and what their bowel movements
are like. This is one of the last steps
in SEED, but it is really important.

Food / Diet:

• We need you to write down what
your child eats for 3 days.
• What do we need – as much as
you can give!
• Remember the “visualize your
portion size” from the clinic visit?
Use that as a guide to write
down the amounts of each food.
Remember to put the time for
each meal and each snack.
• Write as much as you can about
what your child eats. Was the
cereal Kellogg or Post? Was it a
cup or a bowl? Did you use 2%
milk or regular milk? Did you put
½ cup or a full of milk in the bowl?

Bowel Movements:
Poop – Who Knew!!!
• Yes, we want to know about your
child’s bowel movements.
• We need you to tell us about your
child’s bowel movements. The
form we give you to fill in at the
clinic visit will tell you exactly what
to write down.
• For example we would like to know
• How many per day?
• What they look like
• Large or medium?
• What color was it?
• Was it soft or hard?
• If you like, ask somebody else to
help you explain and write down
what the bowel movement looks
like.

2

Issue 2

If you write the meals and the bowel
movements down each day, it will not
take a lot of time. There is a calendar
in your packet, use it to help you
remember when to start to keep track
of food and bowel movements. Put
it on the refrigerator or at your desk,
this can be a reminder for you.
Remember, we want to know all the
foods your child has eaten for 3 days,
AND we want the bowel movements
for 7 days.
Questions???? Call your SEED study
office at 404.498.0058 and they will
help you get this last part finished.
THANKS.

Study to Explore Early Development (SEED)

We’re glad Georgia SEED is on your mind!
Georgia SEED enrolls families living in the 5-county Atlanta area
(see map). So far, Georgia SEED has enrolled over 400 families
into the study. GA SEED progress could not have been possible
without the help from the GA SEED families! Nineteen percent
of the total number of families enrolled in SEED have come from
Georgia.

Enrolled Families

429

Caregiver Interviews Done

314

Cheek Cell Samples

240

Questionnaire Packets

284

Developmental Tests Done

261

Physical Exams Done

129

Blood Samples

124

Meet some of the team members who
make up Georgia SEED!!!

Diet Diary

60

Stool Diary

61

Diana Schendel, PhD
Lead Investigator

Laura Schieve, PhD
Co-Investigator

Aimee Alexander, MS Marques Harvey, MPH
GA CADDRE
CADDRE
Study Coordinator
Project Coordinator

Stuart Shapira, MD
Clinician

Charmaine McKenzie
Research Assistant

Subrina Parker
Recruiter

Andy Autry, PhD
Statistician

Shawanna Taylor, RN
Nurse

Phyllis Cook-Stillwell
Nurse

Melody Stevens
Community Liaison

Veronica Masters
Recruiter

Shryl Epps, RN
Interviewer

Nancy Hobson, PhD
Clinician

Horace Thompson
Data Manager

Karen Clay, RN
Nurse

Lisa Wiggins, PhD
Clinician

Julia Richardson, MPH
Research Assistant

Study to Explore Early Development (SEED)

Issue 2

3

Highlights of SEED Progress

Site Snapshot:
Pennsylvania

SEED started in winter 2008.
Our goal: 2,700 families combined from all the SEED study
sites. We now have over 2300 families enrolled.

Pennsylvania Center for Autism and
Development Disabilities Research
and Epidemiology (PA-CADDRE)

SEED staff works closely with families on each step of the
study. Every step is important. The tables below show our
progress. The more information SEED gets the more we all
learn about children with Autism Spectrum Disorder (ASD) and
other developmental disabilities.

PA-CADDRE is a joint-effort of the University of
Pennsylvania, School of Nursing and The Children’s
Hospital of Philadelphia. The Center for Autism
Research (CAR) is where the coordination and support
for autism research from each center comes together.

112083RespCdSEED.indd 1

7/5/2007 3:12:35 PM

For more information visit: www.cdc.gov/seed

The goals of CAR research efforts are to:
• Understand why and how children with ASD are
different from each other
• How is development different for children with ASD
• What developmental and treatment needs do these
children have
The research at CAR includes:
• Epidemiology
• Social work
• Genetics
• Radiology
• Health services
• Psychiatry, psychology
• Neurobiology
• Nursing
• Neuroscience
• Neuropsychology

Enrolled Families

2,304

Caregiver Interviews Done

1,711

Cheek Cell Samples

1,565

Questionnaire Packets

2,008

Developmental Tests Done

1,365

Physical Exams Done

1,186

Blood Samples

1,094

Diet Diary

752

Stool Diary

754

*As of February 1, 2010

Want to know more? Visit the Pennsylvania CAR
website at http://stokes.chop.edu/programs/car/
or call the toll-free number: 1-866-570-6524.
4

Issue 2

Study to Explore Early Development (SEED)

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