A patient or disease registry collects information about patients who are affected by a particular condition. Usually it is an electronic database. Information collected in patient registries can be used by doctors and researchers to improve medical care for people affected by those conditions.
How are patient registries used?
If a disease is rare, a patient registry can allow doctors and consultants to see data from a lot of patients, rather than just the small number they see personally.
Sometimes in clinical trials a treatment is tested against the data collected from a registry, rather than have a group of patients affected by a condition get the trial treatment and a group that don't. Registries are proving to be useful for accelerating the research into orphan drugs (drugs developed to treat rare conditions or diseases) in specific populations.
Some researchers use registries to look for eligible clinical trial subjects. If you are considering a clinical trial, participating in a registry could help put you in contact with a clinical researcher.
For more information about patient registries and how they are used, TREAT-NMD has good further information and FAQ.
How do I find a patient registry that's relevant to me and my condition?
In the first instance, ask your healthcare provider or a patient organisation relevant to your condition.
There are several listings of patient registries in Europe, including:
How will my data be used?
Registry data can be made available for research - for example, to understand the characteristics and course of a particular condition. They may also be used to contact patients eligible to participate in a clinical trial.
Sharing your health data with a patient registry or in other healthcare contexts can be a valuable contribution to research. It is important to understand how your data will be collected, stored, handled and used.
Data Saves Lives is an initiative with the aim of raising wider patient and public awareness about the importance of health data, improving understanding of how it is used and establishing a trusted environment for multi-stakeholder dialogue about responsible use and good practices across Europe.
You may also be interested in the Health Data information for researchers in the Patient and Involvement section of our Researcher Pathways.