A New Collaboration
The National Hemophilia Foundation (NHF) is a nonprofit specifically focused on accelerating research for Hemophilia, a rare blood disorder. It was established in 1948 and now has 52 different chapters spanning the United States. Recently, they have partnered with an organization called ArborMetrix to establish a patient registry. It’s called MyBDC. ArborMetrix specializes in data science, utilizing technologies that analyze healthcare data. They hope that their data analysis will help to deliver insights to researchers who work to improve outcomes for patients.
The registry was officially announced at the 71st Annual Bleeding Disorders Conference.
Their goal was to create a registry which would appeal more to the patient. After all, the research is for them.
MyBDC
MyBDC is referred to as a “community-powered registry.” It includes data collected from those diagnosed with Hemophilia and their families/caregivers. By collecting a multitude of data, the registry provides a “360-degree view” of life with a bleeding disorder.
So how does it work? How can you contribute?
It’s very simple because, thanks to technology from ArborMetrix, everything occurs online. Participants fill out surveys online over several years. All of the data collected is de-identified and confidential.
You can get more information on this registry and enroll here.
How it’s Different
Different from many patient registries, this registry allows patients to view and compare their information to others. Additionally, MyBDC provides educational resources for patients and their families. This access allows patients to not only feel more included in the research process, but it encourages them to contribute more because they can see how their data is being tangibly used.
Ultimately, the founders believe this unique registry format helps in two primary ways-
- Increases the sense of community between the NHF and patients
- Promotes more participation which will lead to better research
We need patients to participate in order to best accelerate research for rare diseases. The fact of the matter is, patients have the most information about their condition and how it affects them day-to-day. What’s exciting, is that these researchers have stated that they have never found such an engaged group of patients before. These individuals understand that the research they are contributing to matters not only for their life, but for the lives of future generations.
The team supports the concept of shared decision-making. Researchers may have the scientific expertise but patients know what they value most in terms of treatment, quality of life, and future investigations. The team hopes that this registry will help patients understand more about their condition, and help them connect with the stories that others have shared about their individual experiences.
The stories patients share will help to shape the future of care.
Looking Forward
These organizations havents stopped developing the registry, in fact their goals have only grown. To help make the platform better they plan to add personalized surveys for patients and their families which center around anxiety, depression, joint bleeds, and many other facets of life with illness. Additionally, they plan to extend access to allow pediatric patients and their families to contribute to the platform soon.
You can read more about this new platform here.
