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Decision Aid for Medullary Thyroid Cancer Patients and Caregivers

This study is developing and testing a "decision aid" (a tool to help you make informed choices) for people with medullary thyroid cancer and their caregivers. It aims to help you decide when to start or stop new medications, join clinical trials, or continue active surveillance (closely watching your cancer). The researchers want to understand your needs, design a helpful tool, and see how well it works in real-world situations. The goal is to help you make well-informed decisions about your cancer care and discuss your preferences with your doctors.

Study design
This interventional study plans to enroll 120 participants. It is not specified if it is randomized or blinded.
What's involved
Participants will use a decision aid and complete a questionnaire.
Compensation
Not stated in the trial record.
Follow-up
Acceptability of the decision aid will be measured up to 1 year after using it.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03892993

Patient Decision Aid in Supporting Decision-Making About When to Start or Stop New Drugs, Join Clinical Trials, or Continue Active Surveillance in Patients With Medullary Thyroid Cancer and Their Caregivers

Recruiting
NAAges 18+InterventionalSupportive care
M.D. Anderson Cancer Center
~120 participants
Updated 2026-07-16 on ClinicalTrials.gov
What's tested:Decision AidQuestionnaire Administration

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Needs assessment
Measured over Up to 1 year
+3 more outcomes measured

Conditions

Thyroid Gland Medullary Carcinoma

Explore related trials

Thyroid Gland Medullary Carcinoma

Where it's being run

1 sites across 1 states
Texas1

Study leadership

  • Elizabeth G Grubbs, MD · PRINCIPAL_INVESTIGATOR · M.D. Anderson Cancer Center

Who to contact

Elizabeth G Grubbs, MD
[email protected]
(713) 792-0665
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

Aged 18 years old or older
Have or will face(d) this decision, including: Patient/survivor - who has medullary thyroid carcinoma, as determined by a clinician or documented in the Genetics of Endocrine Neoplasia Registry or sporadic (medullary thyroid carcinoma) MTC database; Caregiver/family member - of patient/survivor who has medullary thyroid carcinoma, as nominated by the patient/survivor; and Provider - who treats patients/survivors who have medullary thyroid carcinoma, as described above
Able to speak, read, and write English
Pregnant patients are included

Exclusion

Individuals with cognitive or psychological impairment (e.g., depression, anxiety, severe mental illness; as documented in the registry)

What this trial measures

  • Needs assessmentUp to 1 year

    The research team will tabulate and summarize responses to the needs assessment questionnaire to identify priority design needs, and review open text areas for notable suggestions.

  • Decision aid design refining (storyboarding)Up to 1 year

    During storyboarding, the research team will iteratively review the interviewers' notes regarding participant feedback, identify predominant recommendations for improvement, and make decisions to refine the decision aid design.

  • Decision aid acceptabilityUp to 1 year post decision aid

    The research team will review the Think Aloud interview notes for potential opportunities for improvement. Responses to the post-decision aid acceptability questionnaire will be tabulated and summarized into tables for publication and presentation using Excel. The Stakeholder Advisory Panel will review responses to the post-decision aid acceptability questionnaire, to confirm that viewing the decision aid provides a balanced presentation of the options and is not likely to bias patients'/survivors' initial preferences.

  • Real World EvaluationUp to 1 year post

    Responses to the participant characteristics will be tabulated and summarized for presentation and publication, as appropriate. The research team will tabulate and summarize responses to the needs assessment questionnaire to identify priority design needs and review open text areas for notable suggestions.