Cure GM1 partners with two companies to facilitate patient data collection and research, Invitae Patients Insights Network (PIN) and AllStripes. Both initiatives collect data, both strive to characterize the patient journey and the patient community, and for both, patients own their data. From the research perspective, these are very separate endeavors, both in design and deliverables, but their shared purpose is to gather and share data from many patients to inform research and advance the knowledge of GM1, so that ultimately those impacted by GM1 can receive better care.

Invitae PIN

The Invitae PIN is considered a patient registry (parent-reported), and is in fact the largest GM1 patient registry of any patient advocacy group. They provide insights based on parent-reported outcomes, accessible by participants and research scientists. The PIN is working with the Clinical Genome Resource (ClinGen) to help PIN participants share their genetic and health information to help better understand the relationship between gene variants and GM1. Participant engagement is at the core of the PIN design. They also anonymize data to protect the privacy of participants.

How data is captured: Invitae PIN administers several surveys to participants, which means the participants enter the data the PIN collects. 

The process is: 

  • Patients register with the Invitae PIN and complete several de-identified* surveys, which broadly characterize the patient journey and experience. The surveys may take some time to complete. *De-identified means your data does not include your name, birthday, or any other identifiers.
  • In addition, custom surveys are sometimes deployed for research by Invitae or its partners.
  • The Invitae PIN also includes an option for patients to share data from their genetic reports through a data-sharing initiative run by ClinGen. This is a separate study built into the PIN, which also gives participants the option to receive updates about their genetic test results. It is not conducted by Invitae. Learn more from a short video.

Its aims are: to administer surveys in order to collect and compile patient data to support research studies. 

Invitae PIN FAQs

Register for Invitae PIN Here


AllStripes is a rare disease data analysis company. Their patient data initiative is focused on medical records collection and conducting a research study. Patients interface much less with AllStripes than with Invitae PIN. 

How data is captured: With AllStripes, participants only complete forms that give AllStripes access to their medical records. AllStripes, rather than patients, enters the data the platform collects. 

The process is: 

  • AllStripes takes in a patient’s medical records. It digitizes and standardizes this medical history across medical facilities to create a consolidated set of data. This data can be used to power other research and clinical initiatives. 
  • Participants receive access to their medical records through a single, secure online account. You can download your records at any time, or share with doctors or other members of your care team.
  • Also, AllStripes may administer parent/patient surveys, which are secondary to the medical record analysis.

Its aims are: to develop a real-world data platform to aid researchers and drug developers in creating and accelerating treatments for GM1. 

AllStripes FAQs

Register for AllStripes Here

If you are the caregiver for someone with GM1, please consider participating in both AllStripes and the GM1 PIN. The more data that becomes available, the faster treatment can be developed. If you participate in one or both of these initiatives, you will help our cause enormously.

Please visit our Take Action Page to learn about what else you can do to help Cure GM1.

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