Dear parent/legal guardian,
Your child has been diagnosed with Multiple Sulfatase Deficiency and your doctor will have explained to you by now what this diagnosis means. We would kindly like to ask if you would agree to make the clinical data of your child available to the MSD Patient Registry. This registry is supported by MSD Action Foundation.
Participation in the MSD Patient Registry is voluntary. You will only be registered after we have obtained your written informed consent. There are no disadvantages or negative implications for you or your child should you chose not to participate in the patient registry or should you withdraw your participation at a later date.
Dr. Lars Schlotawa