Welcome!

Thank you for responding to the invitation to share your thoughts on single ventricle heart disease research.

Our team at Additional Ventures, a nonprofit foundation that funds research, is very interested in hearing from patients and families about single ventricle disease. After hearing from you and other parents and patients in the single ventricle community through this survey, we plan to do a series of interviews to learn more about the types of research that patients and families think are most important. After that, we plan on hosting group sessions to get additional thoughts. Everyone who completes this questionnaire will hear back from us about single ventricle research, and everyone who agrees to participate in additional conversations will be paid for their time.

We want to hear from people with many different experiences and perspectives. These questions will help make sure that we are including people from as many different backgrounds as possible. The information you share will be held in very strict confidence.

We deeply appreciate your willingness to share your thoughts with us. If you wish to stay in touch by receiving our newsletter, please email us at info@additionalventures.org.

Sincerely,

Diane Pickles
Program Director, Additional Ventures
Mother of Jake, age 26 and living with HLHS

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* 1. Please share your name and email so we can follow up and stay in touch about ways you can inform single ventricle research. (All information will be held in strict confidence. We will never share or sell your personal details or your contact information. You will never be asked for financial donations.)

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* 2. Who in your life has a single ventricle heart defect?

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* 3. What type of single ventricle heart defect do you or your loved one have?

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* 4. What is (are) the hospital(s) where you or your loved one has received care?

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* 5. Where do you currently call home?

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* 6. How would you describe the community you live in?

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* 7. What gender do you identify as?

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* 8. Which racial or ethnic group(s) do you identify most closely with? (check all that apply)

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* 9. What is the last year of school that you finished?

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* 10. If you were to participate in an interview, which language(s) would be best for you?

Please answer a few more questions to help us better understand your thoughts on research.

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* 11. Have you personally participated in any of these types of research activities in the past? (Related to single ventricle or any other disease or condition; select all that apply)

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* 12. There are many different types of research. We would like to know what kinds of research in single ventricle disease are most important to you. Even if you think that ALL research is important, please rank how important each type is to you.

  Very important Important Somewhat important A little important Not at all important
Research to increase knowledge about the science or biology of a disease
Research to find new and better ways to treat symptoms and detect, diagnose, treat and prevent a disease
Research that compares different treatments to see which are most effective for which patients under specific circumstances
Research that looks at how a disease occurs in a certain group of people and possible ways to limit the impact of the disease on those individuals
Research that tries to identify how money and other resources should be put towards improving the health of a group of individuals
Research that looks at how people are able to access health care, how much medical care costs, and how patients are affected by the care they receive
Research to understand how social and environmental factors may prevent disease, increase how long someone lives, or improve the quality of someone's life

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* 13. What else would you like to us to know about your experience with single ventricle heart disease?

Thank you so much for sharing your experience and thoughts with us. If you have provided your contact information, we will be in touch soon with more information. We appreciate your time and interest in helping move research forward.
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