A collaborative research network (CRN) is a network of patients and families, physicians, researchers, and patient organizations working together to accelerate research and cures for a particular disease. A CRN is patient focused and driven by a spirit of collaboration across stakeholders. This means that the priorities are reflective of the needs of the community and seek to utilize the talents and expertise of everyone in the network.
Follow the progress of the CHI Collaborative Research Network: sign up here.
The CHI CRN builds on the work and momentum of the research done by many experts around the world and our own patient-powered research through the HI Global Registry. The CHI CRN will continue to build on existing projects by forming new partnerships to increase collaboration across institutions and organizations. The project relies on everyone in the CHI community bringing their perspective and expertise including:
- Patients who can inform research from the unique perspective of living with the disease and who inspire physicians and scientists, collect data to share the unique perspective of living with the disease
- Academic researchers who understand the scientific underpinnings of the disease and can help unlock unknown components of the disease
- Clinicians who dedicate their lives to caring for patients
- Industry researchers who investigate potential news treatments that can be brought to market
CHI CRN Mission
Create a hyperinsulinism collaborative research network that puts patients at the center of a strategy that leads to faster and more accurate diagnosis, drives new evidence-based treatments and cures, standardizes clinical guidelines, and facilitates increased and improved access.
The HI CRN has a commitment to the following cornerstones:
- Supporting collaboration across the globe
- Elevating the patient voice and ensuring the patient perspective is central to our work
- Guaranteeing access to information, medical specialists, and treatments regardless of income and geography
- Engaging new researchers and ideas to find innovative concepts and foster additional leaders in the HI network
- Addressing diversity, equity, and inclusion in our work and our community
The CHI CRN launched in December 2020 thanks to a grant through the Chan Zuckerburg initiative Rare as One Network. CHI is one of 30 rare disease patient organizations who are part of this network. Through this program CHI has received mentorship, trainings, and peer-support to help up build our CRN and strengthen the organization. In 2021, we are working with the CHI community to identify a strategically prioritized roadmap for HI research; formulate a diverse funding strategy to launch the collaborative research agenda’s prioritized work; and establish an enduring foundation for sustaining the collaborative research network to achieve breakthroughs in timely diagnosis, better treatments and cures for all types of HI with the ability to provide patient-level support to access care.
To do this, we have formed working study groups called workstreams to investigate key areas of HI. These groups will work together across the year to identify research gaps and then identify what is needed to treat HI more effectively and ultimately find a cure. Stay tuned for more information related to how you can get involved in the workstreams and how the CRN is progressing.
The following descriptions are the definitions for each workstream.
Medical and Surgical Treatments: To create a prioritized research agenda for a better future for those with HI through new and better medical and surgical treatments or cures.
Clinical Trials/Industry Engagement: The purpose of this workstream is to create a space where patient and industry leaders and academic researchers and clinicians can come together to consider collaborations and approaches to enable progress in clinical research for today’s projects and tomorrow’s innovations.
What is HI: Nomenclature and Inclusion: The purpose of this workstream is to develop a plan to bring synergy to the way the patients, physicians, and medical industry decision makers describe the disease, to better define who is counted in the “HI patient community,” to agree upon a set of terms that define the condition and its subtypes, and to educate all appropriate stakeholders.
Care Guidelines/Centers of Excellence: To create a prioritized research agenda on the topic of Care Guidelines/Centers of Excellence, we envision a better future for those with HI through improved care guidelines, centers of excellence, and collaboration for better quality of life and outcomes for patients.
Genetics: To create a prioritized research agenda for the topic of Genetics, we envision a better future for those with HI through improved understanding of genetics for better quality of life and outcomes for patients.
Diagnostics: To create a prioritized research agenda for the topic of Diagnostics, we envision a better future for those with HI through improved diagnostics for better quality of life and outcomes for patients.
Glucose Monitoring: To create a prioritized research agenda for the topic of Glucose Monitoring, we envision a better future for those with HI through improved glucose monitoring for better quality of life, diagnostics, and outcomes for patients.