The benefits of establishing patient registries are evident in rare diseases. Single institutions, or countries, often do not have sufficient numbers of patients to conduct generalizable clinical and translational research.

A patient registry allows clinicians and healthcare professionals access to patients with a particular condition. The registry will hold information such as medical history, clinical details, diagnosis and more. This information is of extreme value in enabling the study of a given condition and the development of research specific to the patients and the condition.

Participating in a registry typically ensures you will be kept informed of developments relating to your condition. In particular, you could:

  • Receive news about new and ongoing studies
  • Receive information about your condition
  • Have the opportunity to share information about yourself with researchers and patient advocacy groups
  • Have the chance to be contacted directly by researchers to join studies in clinic or online

Please check back for further links and information about specific PHTS registries which will be posted here shortly.