Are you bored waiting for the SuperBowl pre-game? Or twiddling your thumbs while waiting for the next commercial to air?
If so, please take a few minutes and start to enter your data into the new MLD Patient-Powered Registry. We want to understand MLD better, accurately characterize the MLD patient, family, and caregiver journey, justify newborn screening, improve clinical care and of course, to improve research and approval of new therapies. We can’t do this without you!
YOU WILL GET SOMETHING BACK FOR EVERY QUESTION YOU ANSWER … the survey is designed to report back the results of everyone else’s answers as you complete each question so you will know if you are typical or a bit different than other MLD families. Of course, the first few of you filling in the survey won’t have a lot of other family’s data to look at but after the first 10 or 20 of you participate it will become a rich dataset.
WE NEED EVERYONE TO PARTICIPATE … Please note that we want to know about your MLD loved one(s), including MLD angels that live with us in our hearts. By sharing your experiences and data your loved ones will be part of changing the world for those that haven’t started the MLD journey.
YOU CAN PARTICIPATE if your loved one HAS ANOTHER LEUKODYSTROPHY or LYSOSOMAL DISEASE … We won’t ask you to fill out the MLD specific questions, but there is plenty to learn from the broader community as well.
We’ve been working a long time to get this survey launched … there are modules for you to complete at your own pace on demographics, diagnostics, therapies, cannabis, awareness, newborns screening and
You own your survey data and will always have 100% control over it. MLD Foundation will manage your data and creates the survey modules, Genetic Alliance developed and is hosting the survey platform, and Private Access will make sure that it is always secure.
Over the next few days we will tell you more about the survey and how we are using the data you provide.
At the Super