AllStripes provides a secure platform for patients to come together and make a difference from the safety of their own home.
Medical information is crucial in furthering research for rare conditions like MPS IVB. AllStripes provides a secure platform for patients to come together and make a difference from the safety of their own home.
Priest Family
,
Ambassadors for Morquio B
AllStripes provides a secure platform for patients to come together and make a difference from the safety of their own home.
Medical information is crucial in furthering research for rare conditions like MPS IVB. AllStripes provides a secure platform for patients to come together and make a difference from the safety of their own home.
Priest Family
,
Ambassadors for Morquio B
After I joined, I instantly became an advocate for the research and development for Morquio B therapies, which we so desperately need.
I believe it is important to have our voices heard and share our stories to encourage and inspire others. AllStripes provides that platform for us patients to do just that. After I joined, I instantly became an advocate for the research and development for Morquio B therapies, which we so desperately need.
Arthur
,
Morquio B Ambassador

5

/

15

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

Morquio B

mucopolysaccharidosis type 4B

Your experience with
Morquio B
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
Morquio B
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

Morquio B

MPS IVB is a progressive condition caused by pathogenic variants in the GLB1 gene. GLB1 is an important part of the body’s process of breaking down large sugar molecules called glycosaminoglycans (GAGs). Pathogenic variants in GLB1 lead to an accumulation of GAGs in the lysosomes. Lysosomes are the compartments in cells that break down molecules.

Active research studies

No items found.

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