We are excited to share that the the Minnesota Adrenoleukodystrophy Registry Study (MARS) is open! Please click on the link to enroll your child.
redcap.ahc.umn.edu/surveys/...
Why are we conducting this research? Our goal is to assemble a large resource of clinical and biological data from families affected by ALD to help us understand the natural history and outcomes of disease.
What are we asking participants to do? If you agree to participate, we will ask you to complete a survey every six months. We also hope you will consider sending us biological specimens.
How will I benefit from this study? Although your participation in this project may not have a direct benefit to you, it can help lead to exciting scientific advances in medicine that can help future patients.
