Cure HHT
Research Network
A collaborative, patient-led research network.
Cure HHT is excited to launch the Cure HHT Research Network, an HHT patient-led research network that encourages the sharing of ideas among patients, scientists, and physicians.
The Cure HHT Research Network aims to bring safe, effective treatments to patients more quickly by prioritizing research based on patient needs, broadening the HHT scientific community, and encouraging global collaboration.
GOALS
1. Establish a large, collaborative scientific and patient community
Encourage collaborations between basic scientists and clinicians.
Promote data sharing and sample sharing.
Expand to underserved areas.
2. Incorporate the patient voice to drive basic science research and ultimately clinical outcomes
3. Develop treatments for HHT approved for patient use by regulatory institutions
PROCESS
The Patient-Driven Research Network will achieve its mission through an iterative process, or a set of repeated steps, coming closer to our goal with each repetition.
1. Complete a landscape analysis of the current state of HHT research (clinical and basic science); review the scientific literature to have a complete picture of what research has been done.
2. Identify gaps in research (from perspective of patients, clinicians, and researchers).
3. Prioritize most important next steps in research.
4. Identify the best professionals to pursue prioritized research (both inside and outside of the HHT community).
STRATEGIES FOR 2021
JANUARY: Survey the patient, researcher, and physician communities to identify research topic areas that most urgently need to be addressed as well as identify gaps in research
FEBRUARY: Launch HHT Ideas Hub online forum for open discussion between patients, researchers, and physicians.
NOVEMBER: Host 1st International HHT Research Network Working Meeting to discuss community research priorities and determine next steps.
RARE AS ONE PROJECT
Cure HHT is 1 of 30 organizations selected to participate in the Rare As One Network, which will provide Cure HHT with funding, tools, expansion support, and training to create a larger, more integrated HHT community.
Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, CZI is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. CZI invited nonprofit, patient-led organizations focused on a rare disease to apply for a two-year funding opportunity to develop and launch collaborative research networks in partnership with clinicians and researchers.
CZI’s Rare As One Project seeks to lift up the work that patient communities are doing to accelerate research and drive progress against rare diseases, which affect approximately 400 million people worldwide. The program provides funding, tools, and capacity-building support and training. Cure HHT is one of 30 organizations selected to participate.
Participate
The HHT Patient Survey
Understanding the impact of HHT on you and your family will allow the Cure HHT Research Network to identify research needs and prioritize those that are most important to our patients. Please encourage any affected family members to complete this survey as well – the more responses we receive, the better the outcomes represent our community!
Our Mission
The Cure HHT Research Network aims to bring safe, effective treatments to patients more quickly by prioritizing research based on patient needs, broadening the HHT scientific community, and encouraging global collaboration.
Contact
Cure HHT
P.O. Box 329
Monkton, MD 21111
P: 410-357-9932
F: 410-472-5559
E: researchnetwork@curehht.org
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Stay Informed
Stay up to date with the latest news about the project. Your email will not be shared and will remain confidential.
Thank you
Thank you for your interest in the project. We will be in touch with updates soon.
Emails will come from researchnetwork@curehht.org so make sure to bookmark it.