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Become a Member! 

DNA/Tissue Bank &

International Cavernous Angioma Patient Registry

We need everyone's participation!

For several years, Angioma Alliance has operated a DNA/Tissue Bank with a corresponding clinical database. To date, our DNA/Tissue Bank has supported the work of six laboratories and led to the publication of several important papers.

 

We are now ready to begin the next step. We ask for your participation in the Angioma Alliance International Patient Registry. We will use this resource two ways.

  1. The International Patient Registry will provide a snapshot of the larger community of people affected by cavernous angiomas.  Participants in the International Registry will be able to see this compiled information.
  2. The International Patient Registry will provide a way to contact affected individuals about opportunities for participation in research studies including clinical drug trials.  Participants will have the opportunity to contact researchers themselves to let the researchers know that they are interested in participating in a particular study.

If you are already a member of the DNA/Tissue Bank, you are also encouraged to be part of the International Patient Registry and vice versa. You will need to sign up for each separately. The purpose of the DNA/Tissue Bank is different than that of the International Patient Registry. With the DNA/Tissue Bank, Angioma Alliance collects biological samples and very, very in-depth medical information. Researchers obtain the samples and de-identified information from Angioma Alliance for use in their work. Participants in the DNA/Tissue Bank do not have direct contact with researchers.

 Below is a side-by-side comparison of the two programs.

 

DNA/Tissue Bank

International Patient Registry

Who can participate?

Those with past/future surgery or with multiple lesions

All affected individuals, including those post-surgery and/or those enrolled in the DNA/Tissue Bank

Will I provide a blood sample to Angioma Alliance?

Yes

No

Will Angioma Alliance receive a tissue sample if one is available?

Yes

No

How much time should I expect to spend during the first year of my participation?

3 hours

30 minutes

How much time should I expect to spend in following years?

30 minutes

20 minutes

Can I withdraw from the project?

Yes

Yes

Will I complete an online questionnaire?

Yes, a short questionnaire for screening

Yes, a more extensive questionnaire

Will I participate in an interview with Angioma Alliance?

Yes

No

Will I complete medical record releases for Angioma Alliance?

Yes

No

How do researchers interact with me?

You will not interact with researchers directly. Angioma Alliance will provide de-identified information to researchers.

Angioma Alliance will contact you if you match the criteria for a study. You will contact the researcher if you would like to participate.

Is there annual

 follow-up?

Yes, we would like you to participate in a 15-20 minute interview to update your information.

Yes, we will email you to remind you to update your online information.

Will my information remain confidential and anonymous?

Yes

Yes, unless you choose to share your information and identity with a researcher.

How do I sign up?

Complete and submit the interest form at www.angioma.org/dna

Angioma Alliance will send you an Information and Consent document to review.

Visit www.angioma.org/registry

Read the Terms and Conditions, register, and complete your information online.