I joined AllStripes because I want babies with CN1 to have more treatment options than I had.
Marlin
,
advocate for Crigler-Najjar syndrome type 1
I joined AllStripes because I want babies with CN1 to have more treatment options than I had.
Marlin
,
advocate for Crigler-Najjar syndrome type 1
I joined AllStripes because I truly love the idea of people with rare conditions getting the chance to share their story.
I joined AllStripes because I truly love the idea of people with rare conditions getting the chance to share their story, talk about who they are, and bond with others who, like them, have been through similar challenges.
Thomas
,
CN1 Ambassador

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20

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

Crigler-Najjar syndrome type 1

CN1

Your experience with
Crigler-Najjar syndrome type 1
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
Crigler-Najjar syndrome type 1
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

Crigler-Najjar syndrome type 1

Crigler-Najjar syndrome is a very rare genetic disorder caused by the deficiency of a specific enzyme responsible for breaking down bilirubin. This causes toxic levels of bilirubin buildup in the body. There are two types of Crigler-Najjar syndrome: Type 1 and Type 2. Individuals with Crigler-Najjar syndrome exhibit jaundice (yellowing of the skin and whites of the eyes).

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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