The exact knowledge of the genetic mutation that is responsible for the Spinal Muscular Atrophy (SMA) is very important for potential treatments, as well as for a better understanding of SMA. Therefore we want to make sure that we have got this information right. Since, however, genetic reports can be difficult to understand – not only for patients but sometimes even for physicians – we ask you to send us a copy of the entire report by post or by fax so that we can complete the required data if necessary. We also ask you to always provide us with contact details for the hospital or clinic where the genetic test was carried out; this helps us, e.g., if you do not have the report and we need to ask your doctor to send us a copy, or if we need some clarification about your genetic condition.
In the first part of the questionnaire we ask for information that could be particularly important for future clinical trials. We can only process your registration fully once all of these questions (the so-called “mandatory items”) have been answered. Of course you can skip some of these questions temporarily while you are registering, for example if you need to discuss something with your doctor. The second part of the questionnaire contains questions that are not mandatory although they are also important (the so-called “highly encouraged items”). We ask you to answer these questions as far as you can.
You can view all the questions in advance.