Invitation Letter 1st Survey

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Dear <Name>,

In the past, you and your child, <name>, participated in the Study to Explore Early Development (SEED). We truly appreciate your previous contributions to SEED and are excited about the things we are learning from that research.

We are now beginning a new phase of SEED – the SEED Follow-up Studies – and hope you will participate again. This study will help us learn more about different types of children as they grow older. One of our goals is to identify how we can support people with autism and other developmental delays or disabilities as they mature. To reach our goals, we need different types of families and children, adolescents, and young adults to participate in the study.

The SEED Follow-up Studies are funded by the national Centers for Disease Control and Prevention (CDC). SEED staff from the CDC and their affiliates, along with their partners from seven other SEED sites located in California, Colorado, Maryland, Missouri, North Carolina, Pennsylvania and Wisconsin are working together to conduct the study. (For PA participants only: The SEED researchers at the University of North Carolina at Chapel Hill (UNC) are working with SEED researchers from Children’s Hospital of Philadelphia to enroll families from Pennsylvania SEED.) (For CA participants only: The SEED researchers at CDC are working with SEED researchers from [CA site] to enroll families from California SEED.)

If you agree to take part in the SEED Follow-up Study, you will be asked to complete a survey about your child’s health and development. Once you complete this survey, you may be invited to take part in more surveys about your family and your child. (For CO, GA, and MD participants only: Some families may also be invited to attend an in-person developmental evaluation.)

We know your time is valuable. If you take part in this study, you will receive a $30 gift card as a token of appreciation for your time. You will receive additional gift cards if you complete more surveys.

Your participation in the SEED Follow-up Studies is completely voluntary. If you enroll, we ask you to do as much as you can. Please know that any information that you give us about you or your child will be kept private. Only SEED staff and their research partners will be able to look at any information you give us.

There are several ways to learn more about this research and to let us know you are interested in participating. See the back of this letter for ways to contact us about your interest in this study. We will be happy to answer any questions you have.

Please visit CDC’s website at https://www.cdc.gov/ncbddd/autism/seed.html to learn more about SEED. We hope that you will help us with this important research. Thank you for considering this request.

Sincerely,

<CNI staff or SEED Site Project Coordinator>

To let us know you might be interested in the study, choose ONE of these:

Fill out and mail the enclosed response card

Follow the steps on the card to fill it out. If you reply “yes” you are interested in hearing more about the study, someone from the CDC or one of their affiliates will call you to give you much more information. If you reply “no”, you will not be contacted.

[Site-specific option] Call [or text] us at <phone number>

If we can’t get to the phone when you call, leave us a message with your name, your child’s name and the phone number to call you back.

Email us at <email>

In your email, let us know how to contact you – a phone number is best.

In your message, let us know where you lived when you first participated in SEED so we know where you are from.

March 2022