There’s nobody else out there that collects data and medical records like AllStripes.
There’s nobody else out there that collects data and medical records like AllStripes. To have a team of people dedicated to researching and looking through all the similarities and better research and better therapies, there’s nothing better than that, right?
Nicole
,
mother of a child with CDKL5
There’s nobody else out there that collects data and medical records like AllStripes.
There’s nobody else out there that collects data and medical records like AllStripes. To have a team of people dedicated to researching and looking through all the similarities and better research and better therapies, there’s nothing better than that, right?
Nicole
,
mother of a child with CDKL5
A cure for Stella is what we are focusing on — so that we can perpetuate the smiles on everyone's faces.
Joe
,
grandfather of a child with CDKL5

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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

CDKL5

CDKL5 deficiency disorder

Your experience with
CDKL5
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
CDKL5
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 CDKL5 deficiency disorder is important. By joining AllStripes, you can contribute to multiple research efforts without leaving home, the first of which is a study conducted in partnership with Ultragenyx to better understand the condition and support their ongoing research towards a potential treatment.

By contributing your de-identified records, you can help grow knowledge about CDKL5 deficiency disorder and receive all your records in your secure account, at no cost.

Our partners for this research program

Learn more about

CDKL5

CDKL5 is an X-linked genetic disorder characterized by seizures that begin in infancy. It results in severe developmental delays. CDKL5 deficiency disorder usually begins within the first 3 months of life, and can appear as early as the first week after birth. Seizures occur daily in most affected people. Most children with CDKL5 have severe intellectual disability and little or no speech.
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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