SMArtCAREFollow-up observation and therapy evaluation in spinal muscular atrophy

How can I participate in the SMArtCARE registry as a patient?

If you are interested in having your data or your child's data recorded in the SMArtCARE database, the following conditions must be met:

1. Your treatment centre must be registered with SMArtCARE - please check with your treating physician to see if your treatment centre is a participating centre.
2. By signing the patient information form provided by your treating physician, you agree that the staff at your treatment centre may enter your data or the data of your child into the SMArtCARE database. Furthermore, you agree to the processing of your data by the data managers of the SMArtCARE Registry.

Take the time to read the patient information!

Your attending physician will inform you verbally about the data collection process and your rights as a patient and will be available to answer any questions you may have.

Important note: You can revoke your consent to the processing of your data at any time! If you would like to do this, please contact your attending physician.

You are also welcome to contact us directly; the easiest way is via smartcare@uniklinik-freiburg.de. We are happy to answer your questions about the SMArtCARE database.

Here you can find information on data usage.

Important contact points for SMA patients:

For many years, Germany has had the Treat-NMD registry for patients with spinal muscular atrophy, where patients or families can self-register. This registry provides information about new treatment options or ongoing studies.

The patient advocacy group "Initiative SMA" of the German Muscular Dystrophy Society (Deutsche Gesellschaft für Muskelkranke e.V.) provides important background information on the diagnosis of SMA as well as therapy options and can sdvise you on questions you may have relating to SMA.