Advantages for patients

How will I benefit from registering?

The registry is intended as a public service for the benefit of patients living with Myotonic Dystrophy type 1. You will not receive any payment or any other financial benefit as a result of submitting your data to the registry. The results of research facilitated by the registry may be patentable or may have commercial potential. However, you will not receive patent rights and will not receive financial benefits from future commercial development.

Nevertheless, there may be other benefits from participating, including the following: We will inform you if (on the basis of the information that you and your doctor provide) you might be a suitable candidate for a certain clinical trial. We will also inform you if we receive any new information on your disorder which might be of interest to you - for example if we find better ways for caring for patients with Myotonic Dystrophy type 1. The data collected might also provide benefits for other patients with your disorder, for example by revealing statistics on how many people worldwide have the same condition, or providing information for researchers interested in the best standards of care for your disorder.

I want to take part in a clinical trial. If I register, is this guaranteed?

Although one of the main aims of this registry is to make it easier for patients to be recruited for trials, there is no guarantee that registering your details will ensure that you will be involved in a clinical trial. If you are interested in receiving details of trials that you may be eligible for, please tick the box at the end of the online consent form.

However, it is important that you understand that even if the coordinators of a clinical trial believe that you might be eligible for that trial, based on your data about you stored in the registry, it is possible that at a later date it will turn out that you do not meet the inclusion criteria for the trial after all.

I do not want to take part in a clinical trial. Should I still register?

We hope that you will be interested in registering even if you do not want to take part in a clinical trial. Your information will still be useful to researchers who are trying to find out more information about patients living with Myotonic Dystrophy type 1, and we will still provide you with other information that might be relevant to your disorder. If you do not want to receive any information about clinical trials that you might be eligible for, please tick “no” at the end of the online consent form.