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Improving the Prenatal Diagnosis Experience and Long-Term Patient Outcomes

Briefly describe the activity and its purpose.

This course is for medical and genetics professionals and students to better understand the outcomes for people with Down syndrome and other genetic conditions as impacted by improved access to supports and services over the past 50 years. This course also covers the information needs of expectant parents following a prenatal diagnosis and the laws impacting the provision of that information. This course includes videos, a podcast about the basic history of disability rights, quizzes, and reflection questions.

What are the expected learning outcomes for trainees?

  1. Examine how the basic history of disability rights has impacted life outcomes for people with different genetic conditions. 
  2. For patients learning about a prenatal and postnatal diagnosis of Down syndrome, compare the information priorities identified by genetic counselors and the parents of people with Down syndrome.
  3. Define the basic phenotype of people with Down syndrome. 
  4. Identify how outcomes in various aspects of life, including health, educational, and social aspects, have improved over the past 50 years for people with Down syndrome and other chromosome conditions. 
  5. Summarize the values of stakeholders who might be involved in communicating about a diagnosis of Down syndrome, including patients, medical professionals, and the disability community. 
  6. Indicate resources you can use to discuss a diagnosis of Down syndrome and other genetic conditions.

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