Research participants
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

Kabuki syndrome

Kabuki syndrome

Your experience with
Kabuki 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
Kabuki 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

Kabuki syndrome

Kabuki syndrome is a rare genetic condition that affects many different parts of the body, and the range and severity of symptoms differ from person to person. Children with Kabuki syndrome often have distinct facial features, low muscle tone, intellectual disability, heart problems, skeletal abnormalities, growth delay and problems with feeding.

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 what we’re learning from your community’s data, and 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

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What is AllStripes?
AllStripes is the leading research platform dedicated to rare disease.

We are a Public Benefit Corporation on a mission to unlock new treatments for people affected by rare disease, and we’re transforming how patients and families are involved in the research process. We make it easy for participants to access their own medical records and contribute their de-identified information to advance new treatment research – all from home, at no cost.

Our team of experts collects, organizes and analyzes the critical information in each patient's records. This creates a growing pool of new knowledge about each condition that can fuel multiple research efforts with foundations, academic partners and biopharmaceutical companies. The more we know about your condition, the more we can do for your condition.
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How does joining AllStripes work? 
At AllStripes, we want to make it as easy as possible for you to contribute to research. Here’s more detail on how it works:

1. Sign up (takes about 15-20 minutes): Create your private account, authorize us to get to work on your behalf, and share the names of your health facilities.

2. We get to work: We do all the behind-the-scenes work to retrieve and process your records. We will send you updates as we request and collect your records.

3. Access your records: Our team will upload all your records, including doctors’ notes you may have never seen before, into your secure account. You can download your records at any time, or share with doctors or other members of your care team.

4. Power research, from home: Our team de-identifies your records (removing information like name and address), structures the information and combines it with information from the rest of your condition community. Using that new pool of combined knowledge, we analyze patterns in care, symptoms and progression to drive forward treatment research. 

5. Receive updates: We’ll keep you updated on what we’re learning from your community and when new studies are added for your condition.
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Will I have to pay a fee to participate and receive access to my health records?
No. AllStripes’ commitment to patients and families is that there is never a cost to join our research programs or use the platform.
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How can my medical records advance research? 
Your (or your loved one’s) medical records can contain clues that could help advance treatment research. They can be a rich source of knowledge about the symptoms, progression and impact of your condition on patients and families. After we de-identify the information in your records, by removing information like name and address, your medical journey can help with a wide range of research efforts, including:
• Powering new research for your rare disease
• Determining important symptoms to target
• Speeding up development of treatments by improving trial design
• Making multiple research efforts possible at one time

You may also be asked to complete optional surveys within the AllStripes platform. The goal would be to answer specific research questions or provide more insights back to you and your community. 
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How is AllStripes different from a traditional patient registry? 
AllStripes can be a great complement to an existing registry, and you can still join AllStripes if you are part of other registries. A few things that set us apart:

1. AllStripes collects medical records on behalf of patients, removing the burden from patients and caregivers to upload their files or contact doctors.

2. All records in the AllStripes platform are audit-trailed, a requirement for FDA submissions.

3. AllStripes digitizes, structures and abstracts information from medical records, including handwritten notes from doctors that may contain valuable insights. 

4. The information in AllStripes is updated over time. AllStripes looks at data from an entire medical history, including pre-diagnosis, and updates data each year to create a much more complete picture.

5. AllStripes is a research resource that can be used many times. Some registries are created for just one study. With AllStripes, the information from one patient community can power multiple research efforts. 
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How is AllStripes funded?
AllStripes is funded by private investors. These investors are a mission-driven group of companies and individuals who believe that the way rare disease research is done needs to change. Some of these investors include: venture capital companies, philanthropists, executives at well-known companies and individuals who have been personally affected by rare conditions in their families.

AllStripes does not rely on grants or donations, and does not charge patients to use the platform. AllStripes does work with trusted drug development companies who pay fees for our research expertise and to access structured, de-identified information that may help drive their treatment programs forward. This helps sustain AllStripes’ work to invest in additional research projects and rare conditions.
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Can I join an AllStripes program if I don’t live in the U.S.? 
At this time, AllStripes is approved to collect records and conduct research involving patients in the U.S., Canada and the U.K. As we expand to include other countries in the future we will notify the AllStripes community.

In general, we encourage international patients to sign up on the AllStripes platform, even if your country is not yet approved for research. You can still receive the updates and information we provide to your condition community, and you may be able to participate in research when we expand to your country in the future. 
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Can I contribute records on behalf of my loved one who has passed away? 
Yes. Contributing records on behalf of a loved one who has passed away can create a meaningful legacy and provide valuable information to improve the lives of patients and their families for generations to come. 

When signing up for AllStripes, our support team may need additional documentation to obtain your loved one’s medical records on your behalf, at no cost. Our goal is to remove the burden and expense you would experience if you requested these medical records on your own. While exact documentation requirements will vary across the U.S., Canada and the U.K., in many cases a death certificate and/or a power of attorney or similar documentation is required. 

We encourage those who are legally eligible and interested in donating their loved one’s legacy medical records to begin the sign-up process, and upload the documentation if possible. Our team will reach out if any additional information is required.

Questions can be directed to support@allstripes.com.

Privacy and data ownership

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Who owns the information and data in the medical records that AllStripes collects for patients and families?
At AllStripes, we believe that patients own their own data, always. Patients who consent to research can opt out at any point. They may download their data to take with them or contribute to outside research. 

If patients or caregivers consent to being involved in AllStripes’ research, researchers will organize the de-identified data from their medical records, combine it with data from other individuals with the same condition, and analyze that data to look for insights and help advance treatment research.
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How does AllStripes keep patients’ data safe and confidential? 
Only properly trained and authorized AllStripes personnel will have access to patient medical information for processing purposes. AllStripes follows strict policies and procedures to ensure that patient information is protected. To view the full AllStripes Privacy Policy, visit allstripes.com/privacy.

Patients' secure accounts are not accessible to others, unless the patient chooses to share the account with their doctors or caregivers. If a patient (or their legally authorized representative) chooses to participate in AllStripes research through proper informed consent, AllStripes will only share de-identified data with qualified researchers.
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Why do I need to give my address and phone number, and why is that important for research?
Providing this information will help AllStripes’ Operations team to identify which facilities to contact on your behalf and gives AllStripes a way to get in contact with you if there are any issues with your account. Communication is completely voluntary, and a patient or caregiver can opt out at any time. 

It is also helpful for research insights to identify the general location of patients living with a specific condition. This information can be useful for things like choosing trial sites or understanding the impact of travel on patients seeking care. These insights help provide a high-level view of patient location, but your specific address is never shared.
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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