A patient registry is a collection of information from patients who share a condition. It is used for many reasons, mainly to develop therapies, guide medical treatments, and inform the patient and medical communities.

The purpose of HHT Connect is to collect information on all HHT patients in one place, to develop the registry into a powerful tool for research, and to bring together the HHT patient, scientific, and medical communities to better understand and treat HHT. 

This registry study is open to anyone who has an HHT diagnosis and meets the study inclusion criteria for participation. 

This includes:

• Adults who enter information for themselves
• Adults who can’t enter information by themselves and who have a Legally Authorized Representative who can enter data on their behalf
• Children or minors who have a parent or guardian who can enter data on their behalf
• Deceased persons who have a Designated Representative who can enter retrospective data on their behalf

There is no cost to the patient to join this study.

Providing your information to the registry and participating in this registry is voluntary. Participating in the registry may not benefit you directly, but your time and information may help others with HHT in the future. Indirect benefits can also include increased research on HHT and access to new treatments and therapies.

There is true power in numbers, and every patient who registers helps us gain more accurate information about HHT.

• Your health information may help doctors and researchers better understand HHT and improve patient care.
• Your medical information will be de-identified to protect your privacy and combined with that of other HHT patients. You will be able to compare your HHT experience to the experiences of many other patients in the HHT community.
• You can be notified when you are eligible for a clinical trial or research study.
• It’s a chance to tell your unique story, to participate in a community, and contribute to a cure.

Adult patients with HHT (or their caregivers) and parents/guardians of children with HHT can join at hhtconnect.iamrare.org and click the Register link.

• Access the registry by desktop, laptop, tablet, or mobile device.
• Create your password-protected account.
• Gather your (or your child’s) health records, test results, and family history.
• Complete the consent form that will further explain the study.
• Answer the surveys online for yourself as the HHT patient or on behalf of a child/adult with HHT.
• We estimate that it will take between 30 - 45 minutes to complete the initial surveys.
• You do not need to complete all of the surveys at once. We encourage you to complete what you can, take a break, and return to the surveys at your convenience.

Information is collected on a voluntary basis about background, medical history, diagnosis, treatments, and quality of life.

Participants will be asked to return to the registry periodically to update their information or complete new surveys.

The registry uses an online platform which allows participants to contribute data from anywhere in the world. Currently, the platform is only available in English. We hope to have other languages available soon.

The registry is maintained by NORD who hosts the registry on its web-based application. NORD, the National Organization for Rare Disorders, is an independent nonprofit. NORD provides ongoing technical support of the system. Cure HHT provides the day-to-day management of the HHT Connect patient registry.

NORD stores the data on NORD encrypted servers and/or encrypted servers of third-party vendors hosted in Canada. Regular back-up at commercially acceptable intervals is provided. These servers meet industry standards and are compliant with US and international regulations, including GDPR. 

The goal of the HHT Connect Registry is to help researchers, doctors, and industry partners learn about HHT while protecting your privacy.  All data, including those with Protected Health Information (PHI), will be stored in a password protected secure server. Access to PHI will be limited to approved members of the HHT Connect research team and NORD staff.

In all cases, your privacy will be protected. The Registry Advisory Board will evaluate all requests for data from researchers. Researchers will only be provided with the minimum data necessary to accomplish their research study goals.

Whenever possible, the data will be de-identified. De-identification means your name, all dates and your address will be removed from the data, and only a unique identification code will be included. Data containing PHI will only be shared if the research cannot be done without it. The researchers will be required to sign a Confidentiality Agreement in which they promise to keep your information safe.

You are able to withdraw from the registry at any time.

Please direct questions to HHT Connect staff by email, [email protected], or by phone, (410) 357-9932 ext 105. Additional information is also available on hhtconnect.iamrare.org

The HHT Connect Registry will be a valuable resource for future research. If you would like to use data from the HHT Connect Patient Registry for a research project or to notify participants about another study, please contact our registry administrator at [email protected] for more information. Use of the registry is contingent upon project approval by the HHT Connect Registry Advisory Board. For additional information, please click here