This post is part of a special “Q&A with …” series, featuring 5 questions and answers with the finalists in the Collaborate | Innovate Challenge.
Meet Combating Muscle Loss, a market research project capturing patient voice on muscle loss and impact on quality of life to improve recognition of sarcopenia, and a partnership between the Alliance for Aging Research and the University of Maryland School of Medicine.
1. Tell us about the problem you’re trying to solve. What is the source of inspiration for your submission?
Sarcopenia, the loss of muscle mass and strength, is a condition in older people that is very common but almost completely unrecognized by many medical practitioners and the public. Declines in function and diminished quality of life are overarching fears for people as they age and both of these threats are hallmarks of sarcopenia. Regulators currently do not have a policy on sarcopenia and there are no drugs approved for this condition. Research into sarcopenia is focused on its clinical aspects, rather than quality of life impacts that people with the disease feel are important. Because sarcopenia can have a substantial effect on that person’s life and on society, we were inspired to submit our concept so that we could to explore the experience of patients with the disease, identify the facets of the disease that are most troubling to them, understand how they manage the condition in their daily life, and characterize what potential benefits from drug treatment would be most important to them.
2. What impact do you think your concept can make on addressing this problem?
Recognizing and amplifying the sarcopenic patient experience and unmet patient needs are at the heart of our concept. Our main goal with this project is to drive awareness of the disease by highlighting what it is like to live with sarcopenia in the absence of an effective pharmacologic treatment and ask people with the disease what they would like to see from a drug if one is developed. The information from this project will help the Alliance for Aging Research and its partners educate the public about the burden of sarcopenia on individuals and on society. It will also assist in directing patients and those interested in the disease to Aging in Motion, where they can sign up to learn more about emerging research and any clinical trials for sarcopenia. But awareness raising is only one component of this project. Ultimately, our concept is designed to produce qualitative evidence about aspects of sarcopenia that patients find most critical and treatment outcomes that matter most to them. This information would serve as a publicly available information source to researchers who are at the early stages of developing outcome measures for the disease, companies who are considering clinical trials of sarcopenia treatments, and regulators who need to evaluate these treatments in the future.
3. What inspired you to enter the Collaborate | Innovate Challenge?
Our team was inspired to enter the Collaborate| Innovate Challenge because of our knowledge, interest and passion to improve the experience of aging for people who live with muscle loss leading to functional decline as they grow older. Because of the high prevalence and impact of this condition and its relative obscurity at present, we believe there is an urgent need to better understand and disseminate patients’ struggles with it. We felt that the Challenge would be the ideal vehicle for advancing this project – innovation needs to be focused on enabling older people to continue living full and active lives in their later years. This vision of active, independent aging is one our team shares and can help make a reality with partnership, mentorship, and support from the Collaborate | Innovate Challenge.
4. Tell us about how your partnering organizations came together. What strengths are realized from collaborating together on your concept?
The Alliance for Aging Research chairs the Aging in Motion (AIM) Coalition. Founded in 2011, AIM is a diverse coalition of patient, caregiver, health, and aging groups working together to press for greater levels of research and innovation to develop treatments for sarcopenia and age-related functional decline. AIM’s patient-oriented interactions with clinicians, regulators and policy influencers overcome obstacles to further development and evaluation of promising treatments for sarcopenia in people as they age. Dr. Guralnik of the University of Maryland School of Medicine serves as head of AIM’s fifteen-member Scientific Advisory Board. We have previously collaborated on a Letter of Intent to the FDA to qualify Usual Gait Speed and the Short Physical Performance Battery as performance outcome measures for use in clinical trials targeting functional decline related to sarcopenia.
Our team brings valuable scientific understanding and genuine interest in this disease that are critical to defining areas that must be measured to properly diagnose and treat sarcopenia, as well as 30 years of experience advocating for aging research and the perspective of more than 30 other advocacy groups who are members of the AIM Coalition. We aim to balance the Alliance’s effective communication skills with Dr. Guralnik’s technical knowledge to maximize the reach of our project to patients, members of the general public, healthcare providers, researchers, the pharmaceutical industry, and regulators.
5. What is the biggest insight or learning you’ve uncovered so far during the Virtual Accelerator?
During the Virtual Accelerator Phase of the Challenge, our team has had access to a number of expert mentors to help us hone our concept prior to the finalist presentations on May 9th. After speaking with more than half of these mentors during the last three weeks and providing an overview of our concept on the Virtual Accelerator webinars, each expert has been moved by the importance of the disease and the need to pursue solutions now to help patients with sarcopenia manage it more effectively. Sharon Terry showed us that coming in first place allowed her team’s patient registry project to have more of an impact than it ever could have outside of the Challenge. We feel that this is exactly the type of impact needed in order for us to heighten awareness and gain acceptance of this condition as a target of more research, therapeutic development and treatment as populations age.
Watch the Combating Muscle Loss team present their concept and implementation plan at the Finalist Event on May 9. Follow @CollaboratePIPH on Twitter for updates as the Challenge progresses.
About the Collaborate Challenge Series
In the spirit of collaboration, Partners in Patient Health and North America Research & Development Hub are partnering on the Collaborate | Innovate Challenge, focused on strengthening the patient voice in the drug development process. Now in its second year, the Collaborate Challenge Series received submissions from a broad variety of organizations dedicated to various therapeutic areas and patient causes. Four finalist teams were selected to enter the Virtual Accelerator and present at the Finalist Event.