People affected by rare diseases and conditions such as hemophilia are often over-surveyed by healthcare providers, researchers, and other organizations looking for answers to some of medicine’s most complex questions. So when the National Hemophilia Foundation set out to launch a patient registry centered exclusively on longitudinal patient-reported data, they knew they needed to create something that would extend unique value to patients and their families.
NHF partnered with ArborMetrix to create MyBDC, a community-powered registry that provides a 360-degree view of what it means to live with a bleeding disorder. The registry collects data from the people directly affected — people with bleeding disorders, their parents, siblings, partners, and caregivers — and transforms it into meaningful information for research and care improvement.
People who participate in MyBDC will share information consistently over several years through web-based surveys. The information participants share will help researchers understand what it means to live with a bleeding disorder. The confidential, de-identified aggregate data gathered through MyBDC will also help participants understand their individual situations and how a bleeding disorder affects their lives.
Using ArborMetrix’s Patient Reported Outcomes technologies, affected adults have already started sending NHF baseline information on how hemophilia and other bleeding disorders have impacted their lives. NHF, and ArborMetrix have launched an innovative a patient-centric dashboard that will allow affected individuals to see their data alongside de-identified, aggregate data from others who are living with their same diagnosis. NHF plans on extending the audience to pediatric populations and family members, as well.
“At the heart of what makes MyBDC valuable is that we are not just taking the information and leaving the participant at a loss to how the information has contributed,” said Maria Santaella, MSN, RN-BC, CPHON, Research Nurse at NHF. “What makes it special is that we are giving the information back to the participants. Through the dashboard, they will be able to look at their information, compare their information, and have access to resources and education.”
Benchmarks within MyBDC will further the sense of community and partnerships that affected individuals and NHF feel toward improving patient health and well-being, and will promote participation that will ultimately lead to answers to some of today's most challenging research questions.
“We have never seen a more engaged group of people who care so deeply for improving the care for the next generation,” said Shannon Eubank, Senior Director of Product, ArborMetrix. “The shared vision we are bringing to life alongside NHF is that the data and stories patients and families share should be available to them and should be transparent in how their stories have helped change how care is delivered. The value these individuals give to the overall community and the research community will now be reflected back to them in ways that support shared decision-making.”
NHF and ArborMetrix have plans to continue to evolve MyBDC through personalized surveys around pain management, mental health, depression, anxiety, joint bleeds, and more. The community is for people of any gender affected by any bleeding disorder, including family members and caregivers.
“Because of ArborMetrix’s dynamic platform, commitment to data security and patient privacy, and their innovative approach and flexible delivery model, we have been able to create MyBDC and will be able to evolve as we need to,” said Michelle Witkop, DNP, FNP-BC, Head of Research, NHF. “We needed to partner with someone who had standards similar to ours. We have been in this partnership, and we are so happy with them and the work we have been doing together.”
For more information about MyBDC and to enroll, visit hemophilia.org/Researchers-Healthcare-Providers/MyBDC.
The National Hemophilia Foundation (NHF) is a 501(c)(3) nonprofit organization dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research.
“Because of ArborMetrix’s dynamic platform, commitment to data security and patient privacy, and their innovative approach and flexible delivery model, we have been able to create MyBDC and will be able to evolve as we need to. We needed to partner with someone who had standards similar to ours. We have been in this partnership, and we are so happy with them and the work we have been doing together.”
Head of Research, National Hemophilia Foundation