WHAT IS A REGISTRY?
The term ‘registry’ usually refers to a list of individuals and some of their health information. There are two types of registries - contact and clinical. Contact registries contain contact information, while clinical registries contain medical and health information.
Information in a registry might be collected in one or more of the following ways:
- Contributed by an individual
- Recorded by a healthcare provider
- Imported from an electronic medical record
The health information from registries can be made available to approved researchers for clinical studies. These studies usually try to alleviate symptoms or find treatments for diseases.
WHY ARE THEY IMPORTANT?
Registries are a way in which ordinary people can become involved with medical research. By donating clinical and contact information, participants can help accelerate research studies and find treatments for diseases.
If you or your loved ones are diagnosed with an illness or disease tomorrow, you will want to go to the pharmacy and pick up the right prescription. However, an effective treatment may not be available yet. Discovering and developing the right treatments requires volunteers to step forward and offer their health information to researchers by using registries or other platforms. Imagine if all of us offered all of our health information so that there was no lack of health data?
Right now health data are not readily available. Let’s offer this great resource to all, and not lock it down with one researcher or company!
To see where Registries fit into the drug development process, visit NETS! NETS stands for Navigating the Ecosystem of Translational Science and provides a web map of drug development complete with descriptions and resources for each step of the process! Click here to access the full view of NETS.
Researchers and citizen scientists alike are able to access many public registries and databases online. There are a variety of registries, each containing different information based on the specific registry. Visit our resources page to find a handful of accessible online public registries.
Starting a Registry
Advocacy organizations play a key role in the advancement of therapies and treatments for diseases. They are committed to the cause in the long-term, able to develop communities of trust, collaborate with diverse stakeholders, and understand the unmet needs of a disease. For these reasons and more, advocacy organizations are in the perfect position to create a registry that can help transform the futures of the disease and the people who are affected by the disease.