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Research Survey on Prenatal Diagnosis in Couples Who Are Known Carriers of NF1

By December 2, 2013December 18th, 2023Awareness, Science & Research

As part of her thesis project, Catherine Potente, a genetic counseling student at the University of Alabama at Birmingham, is conducting a survey regarding prenatal diagnosis in couples who are known carriers for NF1, Cystic Fibrosis, or Duchenne Muscular Dystrophy.

Below is Catherine’s description of her thesis project and a link to the survey:

Decision Making, Social Support, and Privacy in Prenatal Diagnosis

The purpose of this research project is to examine the decision making process for individuals who are carriers of cystic fibrosis or Duchenne muscular dystrophy or affected by neurofibromatosis type 1 (NF1) and who would consider prenatal diagnosis. We hope to identify factors that impact decision-making including the roles of social support and privacy. We are also interested in discovering ways in which genetic counselors can assist patients undergoing this process.

If you would like to participate in the study, please click the link below. The procedure involves filling out an online survey that will take approximately 20 minutes. Your responses will be confidential and we do not collect identifying information such as name, address, date of birth, or place of employment. All participants must be at least 19 years old.

You may open the survey by clicking the following link:  https://www.uab.edu/ccts/bmi/apps/redcap_new/redcap/surveys/?s=2QWPv3

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