Knowledge Translation

What is knowledge translation?

Knowledge translation is the process of turning research into information that people like you, your family, and your healthcare providers can understand and use in real life.

This page is here to help you learn background information about the subject of our project. As we discover new results, we will post them here so you can remain informed and see how the research is making a difference.

The genCARE project aims to generate data that will be directly relevant to the Black Canadian community.

We are working closely with members of the Black community to ensure that everyone is fully informed about these projects and how they might benefit the community. Through community engagement, we strive to ensure that feedback received is used to inform how research projects are conducted. Most importantly, we will ensure that the research results are shared with participants and those who helped us conduct this project.

This project will be:

By the Community, For the Community, With the Community

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What is our project studying?

Our project is using genomics to study the below conditions, diseases that disproportionately affect Black communities. Simultaneously, we are working to increase Black representation in genomic research, ensuring future medical advances benefit everyone.

What is genomic research?

This project will involve genomic research, which involves isolating your genes from your blood sample. Every person has their own unique set of genes, or “genome”. Genes carry the information that helps to determine your characteristics. Genes are made up of DNA. Between people, the DNA sequence of a gene can vary slightly. These differences in DNA sequence are called variants. These variants may or may not be harmful. Genes are passed down from parents to children, but sometimes genes can change between generations or because of other factors.

Why is this important?

Genomic research is being done in this project in hopes of obtaining information that will help us in developing the best ways to prevent and treat persons with the selected disorders mentioned above.

Black underrepresentation in genomics

Currently, most of the genomic information used in medicine comes from those of European background. Those with African ancestry, on the other hand, have the most genomic diversity in the world. Their DNA holds a wealth of important information that could improve healthcare for everyone. Unfortunately, this group is poorly represented in genomic databases. That means:

  • Many important differences in Black communities are missing from the databases scientists use
  • This leads to missed or incorrect diagnoses, along with treatments that are less effective
  • Black people are also often left out of the benefits of new medical breakthroughs in genomics

This project will contribute many gene sequences from Black populations in Canada, better positioning these populations to benefit from advances to personalized medicine.

Personalized medicine

Personalized medicine is a way of treating people based on their unique traits, rather than using the same treatment for everyone. In the context of our project, this means we will be able to:

  • Predict who is at a higher risk based on their genes
  • Prevent disease earlier with targeted screenings or lifestyle changes

For example, a woman found to have a genomic marker linked to breast cancer might get more frequent screenings for the condition.

Genomic Analysis

To carry out the genomic analysis, a blood sample will be drawn, at your convenience, at the site where you enrolled or at a contracted laboratory site. This sample will be used for DNA and RNA sequencing, described below. DNA sequencing will be done on all samples, while RNA sequencing will only be done on a certain subset.

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DNA Sequencing

DNA will be extracted from the blood sample. The DNA will be analyzed using a machine that determines the various building blocks within the DNA using a process called sequencing. This helps to find out if there are specific genes that are present which might be different in people who get the medical conditions that are mentioned above. The DNA sequencing will take place at The Centre for Applied Genomics at SickKids or at another approved facility.

RNA Sequencing

For RNA sequencing, we will use the same blood sample to examine RNA, which acts like a set of cookbooks your body uses to make different proteins. By studying RNA, we can figure out which ‘recipes’ are being used and how they might be linked to certain health conditions. The RNA will be analyzed at The Centre for Applied Genomics at SickKids or another approved lab. This helps us understand more about how the body works and why some people may experience certain health issues.

Biobanking

Biobanking involves the collection of your biological samples or tissues to store for future research use. A biobank is a type of facility that receives, stores, processes and distributes biological samples as well as data related to those samples. Biobanks provide scientists with access to the samples and study data to conduct other research. If you give permission, we will biobank your samples and genetic information for future research. We don’t know the type of studies that will be done with your samples in the future.

A Databank also receives, stores, processes and distributes data. Databanks provide scientists with access to data to conduct different kinds of research. There will be a central national data repository or Databank. The Databank will enable the collection of your genetic (whole genome sequencing results) and other information to store for present and future research on different health outcomes, by researchers in Canada and around the world. Any data shared will be de-identified and anonymized.

Project Results

The overall results of the project will be shared through this project website, scientific publication, conferences, and specially targeted community-focused information-sharing strategies. If you would like to learn more about how your data will be used and what findings will be communicated to you please visit our data governance page.