I joined AllStripes because I understood how important it was to have all of my son’s medical information in one convenient place.
I joined AllStripes because I understood how important it was to have all of my son’s medical information in one convenient place for anyone who was interested in learning more about or researching a treatment for Wilson’s disease
Kim
,
Wilson’s disease Ambassador
I joined AllStripes because I understood how important it was to have all of my son’s medical information in one convenient place.
I joined AllStripes because I understood how important it was to have all of my son’s medical information in one convenient place for anyone who was interested in learning more about or researching a treatment for Wilson’s disease
Kim
,
Wilson’s disease Ambassador

8

/

50

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

Wilson disease

hepatolenticular degeneration

Your experience with
Wilson disease
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
Wilson disease
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.

Your experience with Wilson disease is important and can help researchers advance future treatments.

By joining AllStripes, you can contribute to Wilson disease research efforts without leaving home. This program is currently in the jumpstart phase, so once 50 participants have joined we can begin research and begin collecting your records, at no cost.

You can help by joining below and we’ll notify you when your community reaches the goal!

Our partners for this research program
[Foundation partners still to be added]

Learn more about

Wilson disease

Wilson disease is a rare genetic disorder that causes copper to accumulate in body tissues, including the liver, brain and eyes. If it’s not treated it may cause liver (hepatic) disease, central nervous system dysfunction and death. People with Wilson disease are usually diagnosed between the ages of 5 and 35, most often as teens. When diagnosed early, Wilson disease is treatable, and many people

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.
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Access your records, drive research