All individuals diagnosed with Cavernous Angioma (Cerebral Cavernous Malformations (CCM), Cavernous Hemangioma, and/or Cavernoma) are eligible to create a Registry Profile.
If you are registering for multiple members of one household, you may use the same contact name and email for each family member. However, each family member must be registered separately with a unique username and password.
The registration process consists of two steps:
- Creation of your account
- Logging into the registry and completing your profile questionnaire
To begin the registration process, please complete the information at the bottom of the page, and create your account.
How will creating a profile affect me or my child?
This registry has been created specifically for individuals with Cavernous Angioma. Parents and guardians of persons with Cavernous Angioma may register for them. After registering and creating a profile, you will be contacted periodically with information about new research studies/clinical trials as they become available, as well as upcoming activities and resources.
Will I need to provide additional information?
It is important to have the most current information in the database to assist in developing research studies/clinical trials. Therefore, from time to time, we will ask you to update your/your child’s profile. Periodically updating this information will also keep you closely attuned to the status of your/your child’s health in relation to the larger Cavernous Angioma community.
How is my/my child's privacy protected?
All of the information you provide will be maintained in a secure database, and any information that could identify you and your family members will not be shared without your expressed approval. Should new knowledge become available that may affect you and your family; that is, as clinical trials or research studies are developed for possible participation, Angioma Alliance, based on the information you placed in your profile, will then put you in contact with the investigators responsible for the proposed research study/clinical trial, so that you can decide if you want to learn more. The investigator(s) responsible for the research study/clinical trial will determine if you or your child is eligible to participate and is responsible to answer any questions about the research study/clinical trial. Angioma Alliance is deeply committed to issues of privacy and identity, and will continue to take every available measure to ensure the security of your personal information.
What happens to the information I put in my/my child’s profile, and who has access to it?
The goal of this registry is to make the information you provide searchable, while protecting your identity. De-identified data (information from which all personal identification has been removed) gathered from the profiles will be made available to the Cavernous Angioma community of registered patients, family, friends, caregivers, and medical researchers, in the hope that this de-identified information will support breakthroughs and clinical trials that could lead to better treatments and care management.
The de-identified data collected and compiled by this registry belongs to the Cavernous Angioma community. Angioma Alliance is the guardian of the information contained within the registry. Angioma Alliance will perform the searches for specific questions within the registry and provide reports back to you and the medical research community. Some of this de-identified information will also be shared with databases focusing on the broader range of Cavernous Angioma.
A subset of de-identified information collected from each profile will be shared with global databases with whom Angioma Alliance collaborates, in order to develop global knowledge of Cavernous Angioma that may lead to new research studies/clinical trials and improved clinical treatment.
What if I register myself/my child in more than one registry/database?
It is alright if you participate in more than one registry. The goal of Angioma Alliance is to coordinate activities with other registries where possible. Angioma Alliance will put in place checks and safeguards to help identify duplication of registrants and to coordinate with other registries in placing information in global databases. You and your child's personal identification that you have provided to Angioma Alliance will always remain protected.
At any time, you reserve the right to withdraw your information from the registry. Simply contact the Registry Coordinator, and your profile will be removed.
As a parent/guardian, how deeply should I involve my child in the registration process?
We believe that it is important for all the people participating in this registry to be as informed as possible. Therefore, if you are a parent or legal guardian of a child under the age of 18, but feel that the child is old enough to understand the idea of the registry, we recommend that you talk with your child and obtain his cooperation to participate in this registry. We recommend that any individual over the age of 18 register for himself, unless the parent or guardian maintains legal guardianship. Adult individuals with Cavernous Angioma may still need help to fill out the registration and answer the questions; it’s perfectly alright to provide that help.
If you have any questions regarding the registration process, a Registry Coordinator is available to discuss them with you.
Create your account below then login to the system with your username and password to complete the registration process.
You can register additional family members after registering the initial family member.