I want to join AllStripes because I would love to continue educating and advocating for LNS.
Chanel
,
parent of Jackson who has LNS
I want to join AllStripes because I would love to continue educating and advocating for LNS.
Chanel
,
parent of Jackson who has LNS
AllStripes is opening so many doors for rare disease communities, and we are so thrilled to be a part of it. So much hope!
Sarah
,
parent of Georgia, who has Lesch-Nyhan disease
We are more hopeful than ever that future drugs and treatments are within reach as AllStripes continues to empower the Lesch-Nyhan community.
Danielle
,
mother of a child with LN
Our knowledge empowers others and sheds new light on Lesch-Nyhan disease research.
Michelle
,
mother of two sons who lived with Lesch-Nyhan disease
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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

Lesch-Nyhan disease

Your experience with
Lesch-Nyhan 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
Lesch-Nyhan 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.
Our partners for this research program

Learn more about

Lesch-Nyhan disease

Lesch-Nyhan disease is a rare genetic disorder caused by the deficiency of a specific enzyme responsible for recycling purines. The lack of purine recycling produces abnormally high levels of uric acid and can affect the kidneys, joints, and development.

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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