I joined AllStripes to help research for Sanfilippo syndrome, aka 'childhood Alzheimer's.' No one should have to watch their child die.
Jen
,
Ambassador for Sanfilippo syndrome
I joined AllStripes to help research for Sanfilippo syndrome, aka 'childhood Alzheimer's.' No one should have to watch their child die.
Jen
,
Ambassador for Sanfilippo syndrome
AllStripes is bringing the community closer together and making doctors more aware. It’s very helpful for both patients and research.
Ashley
,
mother of a child with Sanfilippo
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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

Sanfilippo syndrome

Sanfilippo syndrome - MPS III

Your experience with
Sanfilippo syndrome
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
Sanfilippo syndrome
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.

Learn more about

Sanfilippo syndrome

Sanfilippo syndrome, also known as mucopolysaccharidosis (MPS) type III, is a severe lysosomal storage condition that occurs when patients cannot break down long chains of sugar molecules. This causes devastating damage to the central nervous system. There are four subtypes of Sanfilippo syndrome (types A, B, C, and D).

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 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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