Genetics research can tell us more about how our genes work.
Registries and biobanks
Registries and biobanks are important tools for genetics research. A registry is a collection of medical information, clinical data, and demographics (age, male or female, etc.) about people with a specific disease or condition.
A biobank (or biorepository) is a collection of human biological samples (such as blood and tissue) and medical information about the people who gave their samples. Sometimes the word biobank is used to mean a collection of samples AND the research registry that goes with it. Registries and biobanks usually store information and samples for long periods of times, and are used for research studies.
All registries and biobanks try to help solve a research question. For example, they may be used to:
- Learn about the natural history or progression of a disease (how the disease develops in a person over time)
- Understand the genes that cause certain diseases
- Find new tests and treatments for a disease
- Help organize clinical trials and study new ways to treat a disease
- Store information and samples to help answer future research questions
How Does a Registry Work?
People who choose to be part of a registry are called donors. The first step to be a donor is to sign a consent form. After that, you fill out a survey with questions about yourself. The survey asks questions about your age, race, gender, and what medical conditions you have. You also may answer other questions:
- When did you first show symptoms (signs) of your disease?
- What are your symptoms?
- What medicines do you take?
- What tests or surgeries have you had?
Some registries also collect information about your lifestyle and your family health history. Sometimes a healthcare provider or a family member will complete part or all of the registry survey. Often you may be asked to update your information in the registry. Researchers use this information to learn more about a disease over time.
How Does a Biobank Work?
A biobank is the collection and storage of human blood or tissue samples. Samples may include blood, saliva, skin biopsies, or even whole organs. Samples are usually kept in laboratories in large freezers. The freezing preserves them, so they can be used later. Donating a sample to a biobank starts out like participating in a registry. You will be asked to participate in the informed consent process. Then you will fill out a survey with information about you, the person giving the sample.
When researchers use samples for research studies, they need to know something about the person it came from. For this reason, a biobank often has information about the samples it contains. This may include where the sample came from and facts about the person who gave the sample. The information stored in the biobank depends on the purpose of the biobank.
Researchers, Registries, and Biobanks
When researches want to use information in a registry or samples from a biobank in a study, an Institutional Review Board, or IRB, must approve the projects. Each registry and biobank also has a committee to determine which researchers will have access to data and samples. Experts in different areas like medicine and ethics make up the committee. This helps to make sure that people whose information and samples are in the biobank are treated well.
Participating in a Registry or Biobank
People with genetic conditions sometimes participate in registries or biobanks to help researchers learn more about their disease. If a condition is rare, it can be hard to find people to study new treatments. Biobanks make it easier for scientists to get the data and samples they need for research.
Every biobank has different rules about contacting you after you donate your sample. Some biobanks keep contact information about you that is linked to your sample. Others do not keep any information about the people who donate samples. If a biobank keeps your information, it does not mean that you will definitely be contacted, even if researchers learn something about your health while doing a study. The informed consent form that you sign when you give the sample explains the rules for that biobank. Make sure you understand the rules. You should be comfortable with what is expected from you and the biobank before you donate your sample.