Because we don't know what's possible

Matrix Portal & Patient Registry FAQs

patient registry collects information about patients who are affected by a particular condition. Registries are databases containing quantitative and qualitative data about patients.

In rare disease research, registries play an important role in the therapy development pathway. In fact, registries can:

  • Identify participants for clinical trials.
  • Help develop care standards, to help improve the care people receive.
  • Support specific research questions.
  • Provide information for doctors and scientists to learn more about rare diseases.
  • Represent a link between patients and the research community, providing the opportunity for people to receive information directly relevant to their condition (for example, through newsletters).

Matrix is a shared platform connecting patients, caregivers, providers, and researchers in order to collect data, provide a vast community, and advance towards the goal of finding answers and developing cures.

An important feature of Matrix is that it is highly customizable and parents or guardians of MWS patients can control the information that they share.

Matrix can help you and/or others that you care for manage their health data in the following ways:

  • Medication adherence and management with the ability to set up alerts/reminders.
  • Track symptoms & activities that matter to you or your community.
  • Create narrative journal entries to chronical your care.
  • Upload medical documents, MRIs, videos, audio files, school forms, genetic reports, educational documents, etc.
  • Visualize insights and trends derived from your data.
  • Securely share any information with loved ones, clinicians, or others.
  • Review, educate, and share disease specific resources.
  • Advance research through participation in surveys and patient reported outcomes.
  • More widely assessable around the world due to the multi-language support.
  • Versatile useability on your computer, tablet, iOS, and Android devices.

Matrix is the work of Jason Colquitt and his company Across Healthcare.

The Foundation hopes to have 150 participants engaged with the registry by September 30, 2023.  The primary goal during the initial launch of the registry is to collect basic demographic data and genetic test reports.  We hope to collect a minimum of 75 genetic test reports.  In the future we will conduct surveys to gather information in several categories, including clinical symptoms, medications, sleep/behavior issues and topics that our researchers may request to aid their research.

In addition to the benefits described earlier to patients and caregivers, Matrix will empower the MWSF to facilitate collaboration in the following ways:

  • Invite and allow access to patients, caregivers, clinicians, and curators.
  • Directly message users or send broadcast announcements.
  • Matrix provides tools, expert access, and workflow to curate patient information.
  • Generate and analyze various population-based analytics.
  • Provide educational materials to newly diagnosed patients, publications with latest evidence or standard of care, and upcoming studies/trials.
  • Easily establish and sustain a patient registry and/or natural history study.
  • Migrate and/or store historical data.

The bottom line is that Matrix best fits the needs of our Foundation.

You would log in just as you have in the past.  If you have forgotten your password, you will be able to request a password reset.  You will then be asked to update demographic data and complete the consent form.

The PEER platform was being merged with another platform called Luna.  This resulted in changes that made the Luna/PEER platform less compatible with the MWS Foundation’s goals.

Yes, there is a cost to maintain the registry.  During the first year of the registry, the MWS Foundation has been able to offset those costs through a registry sponsorship from Prasco Laboratories.

Yes, since we are no longer using PEER, all registry participation will take place on the Matrix Portal.

The MWS Foundation continues to maintain all the data from the PEER Registry though it cannot currently be integrated with the data that will be captured in Matrix.

The Matrix Registry will be an on-going effort.  After the initial effort to collect demographic information and genetic test results, there will be other surveys to capture additional data that would be important in advancing the knowledge base for Mowat-Wilson Syndrome.

Matrix offers great versatility and useability on your computer, tablet, iOS, Android devices and is compatible with all internet browsers.

A:  Yes, you can access Matrix on your smartphone.

Please, contact Al Triunfo @

The servers are hardened and follow standard HIPAA standards.  All data in transit and at rest use AES 256 encryption.

You control who has access.  On the consent form, you will instruct the MWS Foundation to:

  • Share your data.
  • Not share your data
  • Ask permission before sharing the data.

Privacy Policy and Terms of Service are on the account request page, the sign on page, and always at the bottom of the page the user is viewing.

© Copyright - Mowat-Wilson Syndrome Foundation