Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.
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Studies Enrolling Subjects

ClinicalTrials.gov provides searchable information on Clinical Trials and Human Research Studies. Click here for the Trial List for a search on “Congenital Heart Disease.”

Click here to visit CenterWatch, a source of clinical trials information for both clinical research professionals and patients.

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Quality of Life in Adults with Atrial Septal Defects

What is the purpose of the study?
The goal of this study is to explore the quality of life in adults newly diagnosed with an atrial septal defect (ASD). An ASD is a hole between the upper chambers of the heart.

Who is eligible?
Newly diagnosed adults (21 years of age or older) with an ASD that will be repaired in the cardiac catheterization lab who can speak, read and write in English.

What factors exclude eligibility?
Adults with any other type of congenital heart defect will be excluded.

What are the major risks and benefits of participation?
There is a potential minimal risk of the loss of confidentiality or privacy through your participation in this study. There may be no direct benefit to you for being in this study, but others may benefit in the future from your participation.

What is the time commitment?
You will be asked to complete five questionnaires at three different times, for a total of 12 questionnaires: Before ASD closure in the catheterization lab, one month after ASD closure, and six months post-ASD closure. It should take about 25-35 minutes to complete the questionnaires. You will receive a $15 gift card after you answer the pre-closure questionnaires and a $10 gift card after you have completed the study.

How do people interested in joining the study get involved?
Interested participants should email Mary Heitschmidt RN, APN, at Mary_Heitschmidt@rush.edu or call her at 312-942-9615.

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Adults with Congenital Heart Disease and Family Planning Decisions

What is the purpose of the study?
This study is being done by a Ph. D. Candidate in Nursing, Kathryn Osteen. Kathryn was born with a bicuspid aortic valve and had surgery when she was 32 years old. The valve leaked more after she had two pregnancies. This led her to ask what information is available for individuals with congenital heart disease (CHD) who want to have children. The purpose of this study is to describe the personal experiences of adults with CHD and their decisions about birth control use, pregnancy and giving birth. One phone interview will answer the study questions:

  1. How do adults with CHD make decisions about birth control, pregnancy, and giving birth?
  2. What information do adults with CHD use to make these decisions?
  3. What information do they still need?

Who is eligible?

  1. Men and women between 18 and 49 years of age who live in the United States and speak English
  2. Men and women diagnosed with CHD at birth or as a child or teenager.
  3. An individual who has made family planning decisions in the last five years. This includes but is not limited to the use of birth control, getting pregnant, and giving birth.

What factors exclude eligibility?
Current hospitalization or lack of mental capacity to provide consent.

What are the major risks and benefits of participation?
Subjects will not personally benefit from this study. Sharing your story of family planning, pregnancy, and childbirth with others in the CHD community and with health care providers may help others with CHD by increasing awareness of their needs. After the interview is completed, a $20 Amazon gift card will be sent via email.

Risks related to the study include:

  1. The loss of time involved with speaking over the telephone, and
  2. Likely emotional distress that happens when talking about a potentially emotional subject.

What is the time commitment?
One 20-60 minute phone interview will be needed to answer the study questions. The interview will be audio-recorded and typed exactly as it was recorded to a secure hard drive. No identifiers, including personal, physician, or hospital names, will be included in the recording to maintain your privacy. The recording will be destroyed as soon as it has been typed. Data will be maintained with the Faculty Advisor on a secure device at UTA for three (3) years.

How do people interested in joining the study get involved?
Interested participants should email Kathryn Osteen at Kosteen@uta.edu. An interview time will be arranged if the participant meets the inclusion criteria.