Purpose of the TRICALS registry
The purpose of the TRICALS registry is to connect people with Motor Neuron Disease (MND), or Amyotrophic Lateral sclerosis (ALS) interested in clinical trials with MND centres performing them.
What information is collected?
If you decide to register, you will be asked for information about yourself and where you live. Providing this information is voluntary. We will need it to include your details on our TRICALS Registry. To make sure our information is accurate, we will ask you some questions about your condition. We will also ask you to complete a short questionnaire (this takes around 10 minutes) every 3 months to keep us informed about your condition.
By taking part in the TRICALS registry you are giving us information about yourself that could theoretically be obtained by a third party. To keep this from happening, we will limit who can see your information. We will also have security measures in place that keeps your information safe, including using secure protocols for transmission of data electronically.
The purpose of TRICALS is to match those with MND with potential new treatments. Your participation will allow us to design and perform better trials. If your form of MND is suitable for inclusion in a clinical trial , we will send you an invitation for a screening visit to an MND centre as close to your home as possible.
Your information will be kept private to the extent allowed by law. Only authorized individuals will have access to your information. Your information will be stored in a secure location with limited access.
On the following page, you will be asked to provide your personal and medical information. Your decision to provide the requested information requires your explicit consent. TRICALS may share this information with appropriate TRICALS staff, including administrative and medical staff, and researchers. If you consent, you will help to create the TRICALS Registry and in doing so you will contribute to important research on MND.