What is a patient registry?
A patient registry collects information about patients who are affected by a particular condition.
Registries are databases containing information about individuals who are affected by a specific condition.
In rare disease, they play an important role in the therapy development pathway.
- Identify participants for clinical trials
- Help develop care standards, to help improve the care people receive
- Support specific research questions
- Provide information for doctors and scientists to learn more about neuromuscular diseases
- Represent a link between patients and the research community, providing the opportunity for people to receive information directly relevant to their condition (for example, through newsletters)
The data in registries can be entered by patients themselves, by their doctor or by a combination of the two. TREAT-NMD can advise if a registry is available for a particular neuromuscular condition (contact email) and a list of registries by disease can be found here.
Registries aim to…
…facilitate patient recruitment for clinical trials – registered patients may be able to participate in trials more easily
…accelerate research into new therapies for neuromuscular diseases (NMDs)
…keep registered patients informed about research results, such as new treatments for NMDs
…help specialists gain more knowledge about NMDs – how many people have it, where those people are and how the conditions progress over time
…help achieve equal care for all patients with NMDs worldwide
…provide a link to the community and provide patients with information directly relevant to their condition