What is a registry?

JOIN-HD is a type of project called a patient registry. Patient registries collect information about people who are affected by a specific condition.

Patient registries are particularly important in rare disease research, where they can be key in gathering enough data to make clinical research possible. They aim to collect data from more patients than would be available to a single research centre or investigator. This can stimulate research and show the available pool of potential patients for clinical trials.

Patient registries can help build an overview of a condition, increase knowledge of its natural course, answer specific research questions, and identify patients who may wish to participate in further research.