Matrix Portal & Patient Registry FAQs
What is a patient registry?
A 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).
What is Matrix?
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.
What are the goals for the MWS Matrix Portal and Registry?
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.
Why did the MWSF choose Matrix?
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.
What if I’m already registered on the Matrix portal?
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.
Why did we leave the previous PEER registry platform?
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.
Is there a cost to the Foundation to maintain the registry?
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.
If I was registered on the old PEER registry, do I still need to register on the Matrix portal?
Yes, since we are no longer using PEER, all registry participation will take place on the Matrix Portal.
What happened to the data that was captured in the PEER registry?
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.
Will the registry be a one-time capture of information or will it be on-going?
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.
Is the registry compatible with all internet browsers?
Matrix offers great versatility and useability on your computer, tablet, iOS, Android devices and is compatible with all internet browsers.
Can I use the registry on my phone?
A: Yes, you can access Matrix on your smartphone.
If I need help with the process, who can I contact?
Please, contact Al Triunfo @ atriunfo@mowat-wilson.org
What is the security level of the servers and how is the data encrypted?
The servers are hardened and follow standard HIPAA standards. All data in transit and at rest use AES 256 encryption.
Who can access my data and how?
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.
Where can I find the Privacy policy and security guidelines on the Registry site?
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.
