The ALSP Registry is live in the US and UK. If you are affected by ALSP or a family member of someone who is, please join the study. Information collected may help to develop new treatments for those with ALSP. Join using the QR code for the study app or register at www.alspregistry.com.
What are patient registries and why are they so important in rare disease research?
A patient registry collects information about patients who are affected by a particular condition. Registries are databases containing quantitative and qualitative data about the patients.
In rare disease research, registries play an important role in the therapy development pathway. In fact, registries can:
• 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 rare 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).