The Mowat-Wilson Syndrome Foundation announced today that it has entered into a partnership with Across Healthcare to use its Matrix rare disease platform to create a customized health records portal for Mowat-Wilson Syndrome (MWS) patients. Matrix was designed by Across Healthcare to help patients and caregivers easily capture, track, and share information related to medications, symptoms, activities, and electronic health records. The MWS Matrix Portal will simplify the process of tracking and maintaining easy access to these important health records for MWS patients. The platform has a mobile application and is very user friendly.
“We are excited to partner with the Mowat-Wilson Syndrome Foundation and offer the benefits that our Matrix platform provides,” said Jason Colquitt, CEO of Across Healthcare. “Reliance on paper-based records creates numerous challenges for caregivers, especially when treating patients with rare diseases like MWS, and Matrix will help address those challenges.” Colquitt is a rare disease patient and advocate who engages in substantial philanthropic work for rare disease communities.
“The MWS Foundation is grateful to Jason and Across Healthcare for making the Matrix platform available to MWS patients,” said Deborah Curry, President of the Mowat-Wilson Syndrome Foundation. “Having ready access to important health information at the moment it is needed will not only improve quality of life for patients, the ability to easily share this information will also prove invaluable across the MWS community.”
The MWS Matrix Portal includes functions within the following categories:
Medications – allows for keeping a log of all medications, dosages, and refill dates. Text and email alerts can be set up for medication administration and refill dates.
Symptoms and Activities – allows patients and caregivers to customize any symptoms or activities they want to track such as seizure activity, doctor appointments, medication changes, or sleep patterns. A graph is then created of multiple activities and symptoms to look for possible correlations.
Journals – allows creation of journals to easily keep a written narrative of things such as changes in eating, GI issues, physical therapy feedback, and doctor visits.
Documents – allows uploading of documents so they are easily accessible and in one place.
Message Center – allows for two-way communication with the MWS Foundation.
Resource Center – allows the MWS Foundation to make important documents and forms easily accessible. An example might be a document explaining MWS for a new health care provider, therapist, or teacher.
The MWS Matrix Portal will be available to the MWS community On Feb. 1, 2021. It will only be available in English at the time of launch. Future plans include making the MWS Matrix Portal available in Spanish, Italian, French, and Japanese.
About Mowat-Wilson Syndrome
MWS is a recently discovered syndrome (defined in 1998) and much is still being learned about the physical, behavioral and developmental issues associated with this rare genetic disorder. Major signs include distinctive facial features, intellectual disability, delayed development, intestinal disorders, seizures, congenital heart disease, agenesis of the corpus callosum, and major expressive language difficulty. Most Mowat-Wilson children are non-verbal and experience delayed development of motor skills such as sitting, standing, and walking. Despite their many difficulties, MWS children typically have friendly and happy personalities, though they will require intense medical attention and personal care throughout their entire lives.
To learn more about MWS visit The Mowat-Wilson Syndrome Foundation
The mission of the Mowat-Wilson Syndrome Foundation is to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education.
Company Name: Mowat-Wilson Syndrome Foundation
Contact Person: Peter Garuccio
Email: Send Email
Address:1010 Ashebrooke Way
State: GA 30068
Country: United States