Organizations unite in bid to help navigate 'complex disease' muscular dystrophy

By Liza Laws

- Last updated on GMT

© Getty Images
© Getty Images

Related tags muscular dystrophy Duchenne muscular dystrophy Collaboration Research Patient centricity patient engagement

A partnership was announced this week (April 11) between non-profit CureDuchenne and health technology company, PicnicHealth that will provide as much data as possible to researchers while helping patients navigate complex medical systems.

Both organizations hope to accelerate research towards transformative treatments for Duchenne and Becker muscular dystrophy patients.

PicnicHealth’s platform that organizes patient medical records, will boost and complement the real-world evidence, evidence-generation capabilities of CureDuchenne Link which is a data-integrated biobank that collects and stores bio samples from those with the conditions.   

The initiative will also offer a portal for people living with these complex medical conditions to access their medical records, streamlining the process of managing their care and to create one accessible resource for researchers working towards a cure for the diseases.

This continuous collection of data and bio samples allows scientists to follow an individual’s data across a single timeline, seeing the ongoing impact of Duchenne and Becker muscular dystrophy. Now, researchers will also have access to the full medical history of those who opt into the PicnicHealth platform, allowing them to analyze retrospective and prospective data.

CureDuchenne was founded 20 years ago to find a cure for what is known to be the leading genetic killer of young boys. It has become recognized as a leader in research, patient care, and innovation for improving and for extending the lives of those with Duchenne.

CureDuchenne founder and chief executive officer Debra Miller said: “Our unique partnership with PicnicHealth solves two problems – providing as much data to researchers as possible so they can advance their research toward a cure for this devastating disease and helping families living with Duchenne and Becker muscular dystrophy navigate a very complex medical system.

“We will now be able to match the biosamples, genomic data, and patient-reported outcomes data we collect with real-world data to understand the journey of those more fully in the muscular dystrophy community. Researchers will finally gain access to a unique biobank and data set which will have tremendous value in their research.”

Those with their information stored with CureDuchenne Link who consent to the collection of their medical records will gain free access to the PicnicHealth patient portal. They will be able to access all their medical records in a convenient, easy-to-use, browser-based interface.

The organizations believe this streamlines what they say can be a very complicated medical journey for patients with a disease as complex as Duchenne or Becker muscular dystrophy, with multiple specialists, medications, and lab tests.

“PicnicHealth was founded to help patients with chronic, complex diseases gain access to and control over their medical records and the opportunity to contribute to scientific research,” said PicnicHealth founder and chief executive officer Noga Leviner.

“Our partnership with CureDuchenne will give members of the muscular dystrophy community the peace of mind that they can easily access and share their complete medical record with their entire care team while helping advance research to facilitate the next generation of therapies for muscular dystrophy.”

Participation in CureDuchenne Link is free and voluntary, as is contributing medical records data through PicnicHealth.

PicnicHealth is a healthcare technology company that partners directly with patients to build deep real-world datasets. The company uses machine learning, combined with human curation, to gather medical records into an easy-to-use online application.

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