Beyond Type 1 and JDRF Come Together to Drive Greater Patient Trust, Engagement & Research Participation

Beyond Type 1 and JDRF Come Together to Drive Greater Patient Trust, Engagement & Research Participation

Beyond Type 1 has partnered with JDRF—the world’s leading nonprofit funder of Type 1 diabetes (T1D) research—to educate the T1D community and the general public about current scientific developments, including the path to a cure for the chronic autoimmune condition. The team is already at work as Beyond Type 1 as collected and shared resources breaking down the most impactful current Type 1 diabetes research into quick and easy to understand information. The help is needed as there are far more diabetes related clinical trials than there are people to fill them.

A Challenging Feeling

Those T1D patients have waited a long time to hear about a cure: in fact such a cure has long felt elusive. Although some upbeat developments arrive in spurts, just quickly to hear about a setback and timline adjustments representing endless delays. In fact, the reference to the cure has felt to many with TD1 to be “just ten years ago” have left some in the Type 1 diabetes community disillusioned, but progress is being made—several autoimmune conditions have disease-alternating therapies available and T1D researchers are on the cusp of identifying such curative therapies.

Real Patient Engagement?

Beyond Type 1 now seeks to raise the patient engagement stakes in a bid to overcome impediments to try engagement. And why not? TrialSite News is a good example of the movement toward more transparency and accessibility in research. The online media platform was founded with that core premise and thus far is traffic and emerging engagement is any indication, it’s working. That’s because patient communities want to be embraced as a true partner; however information is core building block to knowledge which can be empowering.  Hence Tom Scher, CEO of Beyond Type 1 offers “The new research published on Beyond 1 aim to pull back the curtain and provide a close look at where we are now, and how we can work together to propel scientific research forward.” Scher’s organization seeks to bring community to the research work and the research work to the community.

A Core Problem

Research doesn’t progress because there aren’t enough participants to pitch in, or so goes the theory. With over 80 percent of clinical trials delayed or failing as the clinical investigational sites struggle to recruit participants, JDRF reports at least 20,000 people are needed for T1D clinical trials in the United States alone, but researchers have reported a massive shortage of participants.

How to Overcome this Barrier?

Well the organizations will start by showcasing exciting research developments while setting clear expectations about where we are now and where we’re going; Beyond Type 1 plans on opening up new conversations about diabetes science, talk openly about what “a cure” means to this important community while working to get more direct involvement with research.

A Reminder: Some Exciting Historical Points

Patients must remember that diabetes research led to monumental milestones and breakthroughs such as the discovery of insulin in 1921 or the creation of the world’s first insulin pump in 1963 not to mention the modern, hybrid closed loop systems, and treatments for the complication that can arise from living with diabetes were made possible by individual participation in clinical trials. This trajectory will ultimately lead to the cure for Type 1 diabetes.

Diabetes research led to the discovery of insulin in 1921, the creation of the first insulin pump in 1963, and the modern analog insulins used by many living with T1D today in 1995. The continuous glucose monitors, hybrid closed loop systems, and treatments for the complications that can arise from living with diabetes were made possible by individual participation in clinical trials. Research will lead to the cure for Type 1 diabetes.

Interesting Momentum

Biopharma companies are definitely pursuing new approaches to this disease. For example, just a couple years ago Janssen announced a partnership with JDRF to pursue a novel scientific approach that could lead to what essentially would be a cure for T1D via a prevent and intercept model. This appeared to be a first of it kind with big pharma looking to stop the actual cause of diabetes. Exciting but there must be a way to not only inform patient communities but drawn them in for a committed partnership. Much happens online now, hence the development of “digital trust” absolutely imperative prerequisite. The partnership will need to find ways to drive intensified, growing and sustaining ongoing engagement models.                                                                                                                          

Phase I: Open Up in a New Way

Hence the two partners are opening up information for T1D patients to learn from and gain some sense of empowerment. For example, information about beta cell therapies and immunotherapies as well as the latest science of glucose control and complications treatment, plus breaking news and tools to get involved in current clinical trials can be found at this link as well as in Spanish here.

About Beyond Type 1

Beyond Type 1 is a nonprofit organization changing what it means to live with diabetes. Through platforms, programs, resources, and grants, Beyond Type 1 is uniting the global diabetes community and providing solutions to improve lives today. Founded in 2015 with a focus on education, advocacy and the path to a cure for Type 1 diabetes, Beyond Type 1 has grown to also include programs for those with Type 2 diabetes. A new model of philanthropy, Beyond Type 1 aims to change what it means to live with chronic illness. For more information, visit here or follow @beyondtype1 on social media.

About JDRF

JDRF is the leading global organization funding type 1 diabetes (T1D) research. Our mission is to accelerate life-changing breakthroughs to cure, prevent and treat T1D and its complications. To accomplish this, JDRF has invested more than $2.2 billion in research funding since our inception. We are an organization built on a grassroots model of people connecting in their local communities, collaborating regionally for efficiency and broader fundraising impact, and uniting on a national stage to pool resources, passion, and energy. We collaborate with academic institutions, policymakers, and corporate and industry partners to develop and deliver a pipeline of innovative therapies to people living with T1D. Our staff and volunteers throughout the United States and our six international affiliates are dedicated to advocacy, community engagement and our vision of a world without T1D. For more information, please visit jdrf.org or follow us on Twitter: @JDRF.