I want to help other families to feel empowered instead of helpless when it comes to living with MLD and other rare diseases.
Lexi
,
mother and advocate for Axel, who’s living with MLD
I want to help other families to feel empowered instead of helpless when it comes to living with MLD and other rare diseases.
Lexi
,
mother and advocate for Axel, who’s living with MLD
I joined to take advantage of technology that allows me to easily contribute and take part in research that will lead to faster treatments.
Teryn
,
mom and advocate for two children with MLD
I wanted to join a community of others looking to make an impact by helping those in need through their hard times.
Trisha
,
mom of Colton who had MLD
I'd love to educate our community and raise awareness for metachromatic leukodystrophy.
Nicole
,
mother of Gabby who has MLD
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Research participants
needed
Help reach this goal to jumpstart the research program! More participants can join at any time to make research even stronger.
The first recruitment goal has been met! But we encourage more participants to join to make this research as strong as possible.

Be part of the AllStripes program for

MLD

metachromatic leukodystrophy

Your experience with
MLD
is important and can help researchers advance treatments for your community.
By joining AllStripes, you can contribute your de-identified medical records to multiple research efforts for
MLD
without leaving home. We do the work to collect your information, and you’ll receive all your records in your secure account, at no cost.
Our partners for this research program

Learn more about

MLD

Metachromatic leukodystrophy, or MLD, is a rare disease that belongs to two large groups of genetic disorders called leukodystrophies and lysosomal diseases. MLD is caused by pathogenic variants, also called genetic mutations, in the ARSA or PSAP genes. This causes the destruction of the myelin sheath (the protective covering around nerve cells), which leads to permanent nerve damage.

Active research studies

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Benefits to joining

Power to the patients

Benefits to joining

Have a voice in research

Your de-identified records, and your input through surveys, can help guide treatment research.

Access your medical records

We collect your records, at no cost, in your secure account. View doctors’ notes and your care journey.

Learn from your community

Receive updates on what we’re learning from your community’s data, and your research impact.

How it works

1. Sign up

In just 15-20 minutes, create your private account, authorize us to get to work on your behalf, and share the names of your health facilities. No appointments, no uploads.

2. We get to work

The AllStripes team does the work to collect your records, at no cost, in your secure account. Access doctors’ notes you may have never seen and view your care journey.

3. Power research

Our team de-identifies your records by removing information like name and address, and analyzes your community’s data to help jumpstart or speed up new treatment research.

AllStripes FAQs for patients and caregivers

Privacy and data ownership

AllStripes Research is approved and monitored by an independent ethics review board called WIRB (Western Institutional Review Board). WIRB is a group of people who review research studies to protect the rights and welfare of human subjects. They provide in-depth regulatory expertise to support development of research protocols and documentation. Read more.

Access your records, drive research

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