Our Study

Our Study

What criteria will you use to include participants in the study?

Inclusion criteria are a set of conditions that must be met in order to participate in a clinical trial.

The inclusion criteria for this study include:

  • Children or young adults with a disease or condition whose genetic cause(s) are unknown, or a biological relative
  • And approval, willingness and ability to donate biospecimens -urine, blood, tissue, cells, DNA, RNA- to TGen for the purpose of advancing our research efforts.

How do I enroll my child in the study?

Due to study size and the costs associated with processing and evaluating samples, the C4RCD is unable to accommodate every family that contacts our study.

However, if you feel that you meet the inclusion criteria and would like to talk to a clinical research coordinator about participating in the study, please complete our on-line research registry form so that our experts can follow-up with you and determine if you are indeed eligible.

If you would feel more comfortable contacting our coordinator directly, you may send an email to c4rcdregistry@tgen.org.

How Can I Help If I Don't Qualify?

At TGen and the C4RCD we recognize the disappointment of learning you don't qualify for a study, or that a study is full. To expedite future research and to provide those families who don't qualify for this particular study with a way to potentially advance our research, we have created the Center for Rare Childhood Disorders Research Registry to match people willing to participate in research with future studies that match their interests.

To learn more, visit our registry page.

Study Details

The Translational Genomics Research Institute (TGen) and Dr. Vinodh Narayanan are carrying out a research study to contribute to our understanding of genetic diseases. To fulfill this research goal, the study will be looking at DNA (structures in our bodies that make up our genes) and RNA (structures in our bodies that show what genes are turned on or off) from people with neurological disorders of unknown causes.

If you are deemed eligible to participate in the study you will be asked to sign an informed consent form. Once you are enrolled in the study biospecimens and medical information will be collected. The biospecimens for this study will include a 2mm skin biopsy and 1 teaspoon of blood.