For Researchers
Funding, data, biological samples, and a clinical network built specifically so that studying hereditary hemorrhagic telangiectasia (HHT) does not mean starting from nothing.
Resources
What is available to investigators
Investigators at any career stage are welcome, including those new to HHT who work on related vascular biology.
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Research funding
Grants aimed at early-stage and pilot work, including projects that need preliminary data before a federal application is viable.
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Registry data access
De-identified longitudinal data on disease course, symptom burden, and treatment, available under an approved protocol.
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Biobank samples
Blood, tissue, and derived samples from donors with confirmed HHT, with linked clinical and genotype information.
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Clinical site network
Introductions to Centers of Excellence for multi-site recruitment, feasibility assessment, and protocol review.
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Patient engagement
Structured input from people living with HHT on study design, outcome selection, and participant burden.
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Recruitment support
Help reaching a highly motivated patient community that actively seeks out studies, which is often the difference between a trial completing and stalling.
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Scientific conference
The meeting where the HHT research and clinical communities present new work and form collaborations.
Cure HHT Research Network
The Research Hub is where this field actually talks to itself
HHT research is small enough that the same handful of people keep rediscovering each other at conferences. The Research Hub exists so that does not have to wait for a conference. It brings clinicians, researchers, and industry partners into one place, with the working documents this field depends on kept current in the same place.
Membership is by request and is open to investigators at any career stage, including those coming to HHT from adjacent fields.
Inside the Hub
Guidelines
The International HHT Guidelines and the Research Roadmap, kept current
CHORUS
Direct access to the outcomes registry and its documentation
Literature
Latest HHT publications, collected rather than searched for
Groups
Interest groups by research area, plus conference and continuing education material
Five steps
How to request access or funding
- Describe the question. Send a short summary of the study, the data or samples it needs, and the stage the work has reached. A full protocol is not required to begin a conversation.
- Review of scientific merit and feasibility. Requests are assessed for scientific value, the burden placed on participants, and whether the resource requested can answer the question.
- Ethics and data use approval. Access to registry data or biobank samples requires institutional review board approval and an executed data or material transfer agreement.
- Transfer and support. Approved requests receive the data or samples along with documentation, and a point of contact for questions during the study.
- Report back. Investigators are asked to share findings with the community, including results that were negative. In a field this small, a null result saves someone else years.
Start by writing to research@curehht.org.
Open questions worth pursuing
If you are considering entering this field, these are the areas where the community believes progress would matter most, and where Cure HHT can most readily support a new investigator.
Researchers from adjacent fields, particularly vascular biology, hematology, and genomics, frequently find that methods developed elsewhere apply directly to HHT and have simply never been tried here.
Prevention
Stopping malformations from forming rather than treating them after
Epistaxis
Durable treatment for the symptom that most affects daily life
Modifiers
Why the same variant produces very different disease
Missing genes
The 10–15% of families with no identified variant