For Patients

The CADASIL Community Natural History Study

Welcome!

The CADASIL Community Natural History Study is an online registry for people with CADASIL and family members who are at risk for CADASIL. It is sponsored by cureCADASIL, a not-for-profit patient advocacy group, and hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform. This registry will collect information from participants who are affected by CADASIL (or their authorized representatives) and close family members who do not have CADASIL but are at risk for developing CADASIL.

What is a Patient Registry?

A patient registry is a collection of standardized information about a group of patients who share a condition. The information may be used for a variety of purposes such as conducting natural history studies and supporting disease-specific clinical trial recruitment. The CADASIL Community Natural History Study serves to:

Create a partnership between patients, families, and investigators that will encourage communication and education about CADASIL research;
Characterize and describe the population affected by CADASIL to better understand disease burden and progression of signs and symptoms over time;
Identify participants who may qualify for research studies and clinical trials aimed at finding effective treatments for CADASIL;
Pave the way for therapeutic trials by helping researchers identify potential treatment targets and design trials that are more likely to succeed.

What types of data will be collected in the CADASIL Community Natural History Study?

The registry collects data on:

Socio-demographics
Medical history and diagnostics
Treatment and disease progression
Management of care
Quality of life
Participation in CADASIL clinical studies

Is the data secure?

The CADASIL Community Natural History Study follows strict government guidelines to ensure patient information is protected. The platform is served over HTTPS, meaning data is encrypted when sent from the user’s browser to NORD servers. The data is also encrypted in the NORD database. Communications between the registry application server and the database are encrypted as well. As with any electronically submitted information, there is a very rare chance that privacy could be compromised; however, the registry and its security measures significantly reduce this risk.