Biobanking (Optional)

Donation of blood and/or skin for biobanking purposes requires a separate consent, is completely optional, and will not affect a participant's participation in the rest of the study. Please note that NO muscle biopsy is taken for this study.

If participants decide to donate in the optional biobanking, extra blood samples for biobanking are taken once a year during the 3 year study for a total of 4 times.  Serum, plasma, DNA and RNA are extracted from the blood and stored in the EuroBioBank,, for anonymous use in approved research. In addition, a skin sample for “biobanking” is also requested. For this, a little piece of skin is collected, one time only, to grow cells that will also be stored in the EuroBioBank.

Analysis of these biobanked samples is crucial for the identification of disease markers that allow for monitoring of these conditions non-invasively during clinical trials which the Jain Foundation and others plan to fund.