MGFA Relaunches Patient Registry to Help in Clinical Research

Tool also aims to empower patients to better manage their MG

Teresa Carvalho, MS avatar

by Teresa Carvalho, MS |

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The Myasthenia Gravis Foundation of America (MGFA) has partnered with Alira Health to relaunch a patient registry for people with myasthenia gravis (MG) that “capitalizes on technological advances,” the nonprofit announced.

The initial registry was launched in 2013.

The rebranded MGFA Global MG Patient Registry is a safe, secure, and confidential tool that tracks participants’ data with an aim toward advancing clinical research in MG — and ultimately finding better treatments for the disease.

“We see a future where patients are empowered to carry their own end-to-end health care information to obtain more effective treatments, better manage a disease, be healthier, or actively equip their circle of care to assist them,” Gabriele Brambilla, CEO of Alira Health, said in a press release.

“MGFA Global MG Patient Registry is an important step on this path. We are honored to partner with them to help improve the lives of patients with myasthenia gravis,” Brambilla said.

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First patient registry launched in 2013

A decade ago, to better understand patient care, the MGFA — the largest advocacy organization focused on this rare neuromuscular disease — created a patient registry. The data it contains were voluntarily provided by patients, obtained through questionnaires addressing diagnosis, treatment, and insurance status.

Now, aiming to take advantage of advances in technology and a better understanding of MG, the foundation decided to relaunch the registry.

Patients have two options for joining and uploading their health and symptoms data. Participants may choose to register online through a user-friendly webpage through which they can add data from their laptop, PC, or tablet. Alternatively, they may download a mobile application called Health Storylines, from the Apple or Google store, using a smartphone.

The app also provides reminders to help patients follow their treatment plan and record daily activities. Once recorded, each activity is summed up in the form of reports called “My Storylines” that patients can use to help them track their health and make decisions.

Patients may choose what they want to track, as well as what they want to share with their healthcare team between hospital visits. Users also are given any analytical support needed to solve issues related to the app.

Patient contributions to the registry will help drive new and better ways to treat MG.

In addition to app data, the registry will draw on patient information collected every six months through a standardized questionnaire.

This information will be crucial for doctors and researchers to assess the course of the disease and estimate its costs based on the treatments taken by patients. The data also will allow MG researchers to evaluate the potential for clinical trial recruitment and to communicate directly with patients about any new treatments that are approved.

“It is critical for researchers and clinicians to have access to real, up-to-date patient data to help design and build research studies and trials to more accurately prove out hypotheses and objectives,” said Samantha Masterson, president and CEO of the MGFA.

“Patients from around the world require data privacy, and now they can safely and securely share their data to help research sponsors make MG discoveries that could lead to better outcomes and treatments,” Masterson said, adding, “Patient contributions to the registry will help drive new and better ways to treat MG.”