Genetics of Adult Intellectual Disability Research Study

Researchers at the Human Genome Sequencing Center at Baylor College of Medicine want to learn about the genes underlying intellectual disability.  This knowledge will inform future research to improve diagnosis and discover treatments for intellectual disability.

Why are we doing this study?

We are doing this study to learn more about different genes that play a role in developing intellectual disability.

The last 10 years have seen a large number of discoveries in genetic causes of intellectual disability owing in large part to the implementation of DNA sequence based analysis. Some adults with intellectual disability have never had genetic testing or had less comprehensive, older test. The aim of our study is to discover new genes contributing to the development of intellectual disability by investigating DNA sequence of adults with intellectual disability of unknown cause.

How are we doing the study?

We are using a new technology called DNA sequencing. We will isolate the DNA from the sample you provide, and study the variation in your DNA code. 

Who can participate in the study?

You might be able to participate in the study if:

  • You are 18 years or older and
  • You have an intellectual disability and
  • You do not have an established genetic diagnosis (for example Down syndrome, Fragile X syndrome, RETT syndrome)

Photo of woman with Down syndromeWhat will you be asked to do?

If you decide to participate in the study, you will be asked to:

  • Answer questions about your health history to determine if you are eligible for the study
  • Complete and sign the consent form
  • Provide a saliva sample

What are the benefits of participating?

  • Our research may not help you or your family directly. We hope that knowledge gained from this study will help with future research to develop diagnostic tests and potential treatments for intellectual disability.
  • If you agree to the return of genetic results and we discover a known genetic variant contributing to intellectual disability we will contact you and help you find a genetic counselor to explain the results.
  • If you are eligible for the study and you provide a saliva sample you will receive a $20 gift card to compensate you for your time and effort. Maximum compensation is $20 per family.

What are the risks of participating?

  • There is a risk of privacy loss. The current risk is very small and we have procedures and security measures in place to minimize this risk.
  • There is a potential risk that knowing one’s disease carrier status or disease predisposition could result in denial of some forms of insurance. The GINA Act protects you from genetic discrimination by health   insurers or employers. However, the law does not cover all types of insurance (for example life and disability).

How to contact us?

If you are interested in joining the study or would like to get more information please call (713) 798-5759 or email  adultID@hgsc.bcm.edu

Or provide your contact information below and a research coordinator will contact you.

CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.