LiSTENING: Learning in Story: Elicited Narrative Informs Navigating Genetics

Categories:

Genetics & Genomics

Supportive Leukemias / Lymphomas Studies

Eligibility Overview:

This is a non-therapeutic clinical trial open to St. Jude patients only.

Participants have been pre-identified by the primary care team as an English-speaking, four-member family unit diagnosed with TP53 mutation.

Description

The purpose of this research study is to learn more about the factors participants and their families consider when approaching genetic testing and with receiving genetic test results.

The study involves two parts. The first part is an individual interview offered to each member of the family, which would be a private interview for each family member with the study team lasting less than two hours and scheduled at the family member’s convenience. This interview will be audio/digital voice recorded and later transcribed. Participants can choose not to answer any or all of the questions. The second part is a family interview, which would involve taking part in one family interview together with the study team. The family interview will last less than two hours and will be scheduled at the family’s convenience. This interview will be audio/digital recorded and later transcribed.

Objectives

  • To learn what genetic testing means for families and what families experience in the process of receiving genetic diagnoses related to cancers.
  • To learn what family members believe are important for pediatric oncologists’ awareness when approaching genetic testing with specific focus on psychosocial needs and communication needs.

Eligibility

Inclusion Criteria

  • Participants have been pre-identified by the primary care team as an English-speaking, four-member family unit diagnosed with TP53 mutation.

Exclusion Criteria

Members of the four member family unit who, in the opinion of their physician or psychology care team specialist are not capable mentally or verbally of participating in the interview, will be excluded from the study. At current, there lacks an excluded family member as has been pre-identified by the primary care team.

Principal Investigator

Meaghan Weaver, MD

St. Jude Children’s Research Hospital
262 Danny Thomas Place
Memphis, TN 38105  USA
Voice: 1-888-226-4343 or 901-595-4055
24-Hour Emergency Access Pager: 1-800-349-4334
Email: referralinfo@stjude.org

The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.