AllStripes gives us hope that treatments can be developed, so that no child with KS has to go through psychosis and regression.
Julie
,
mother of a child with Kleefstra syndrome
AllStripes gives us hope that treatments can be developed, so that no child with KS has to go through psychosis and regression.
Julie
,
mother of a child with Kleefstra syndrome
Thank you to AllStripes for paving the future for our children! I’m looking forward to a long, fruitful relationship!
Mason
,
father of a child with Kleefstra syndrome
AllStripes provides the Kleefstra syndrome community tools and support to accelerate our efforts toward a treatment.
Geoff
,
father of a child with Kleefstra syndrome
With patient data accessible in one location, AllStripes provides great benefit to both families and researchers working toward a cure.
I look forward to the value KS families will receive through our partnership with AllStripes. With patient data accessible in one location, this provides great benefit to both families and researchers working toward a cure.
Darrick
,
father of a child with Kleefstra syndrome
We joined AllStripes because the more research that is done for Kleefstra syndrome, the more chance there is for a cure!
We joined AllStripes because the more research that is done for Kleefstra syndrome, the more chance there is for a cure, and AllStripes is doing so much to further research!
Shannon
,
mother of a child with Kleefstra syndrome
We are honored to share our experience to help in the advancement of medical research in a way that only veteran parents/patients can!
We lived for over a decade in a "diagnosis desert," and that was the loneliest and scariest time of our lives. We are honored to share our experience to help in the advancement of medical research in a way that only veteran parents/patients can!
Debbie
,
mother and Kleefstra syndrome Ambassador
As parents, sharing our children’s health information is so crucial and gives us a voice in the fight for a cure.
Working for a research university, I see the importance of participants in studies and scientific breakthroughs. As parents, sharing our children’s health information is so crucial and, in a way, gives us a voice in the fight for a cure.
Matt
,
father of child with Kleefstra Syndrome

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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

Kleefstra syndrome

Your experience with
Kleefstra 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
Kleefstra 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.
Our partners for this research program

Learn more about

Kleefstra syndrome

Kleefstra syndrome is a genetic condition that affects many parts of the body. The most common signs of Kleefstra syndrome include intellectual disability, delayed development, limited or absent speech, and low muscle tone. Kleefstra syndrome is caused by DNA changes that affect the gene EHMT1.

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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