Image

Health Related Quality of Life (HrQoL) in Classical Homocystinuria (CBS Deficiency)

Health Related Quality of Life (HrQoL) in Classical Homocystinuria (CBS Deficiency)

Recruiting
8 years and older
All
Phase N/A
  • Technical (Original)
  • Simplified (AI rewritten)

Powered by AI

Overview

Patients, parents of young / handicapped patients, and experts will be interviewed to collect contents relevant for HrQoL in CBS deficiency. Based on these data, a questionnaire will be developed and tested for comprehensibility in patients and parents of young / handicapped patients. A final questionnaire version will be tested for psychometric criteria including validity and reliability.

Eligibility

Inclusion criteria

  • Patients with CBS deficiency from age 8 years
  • Parents of patient(s) < 18 years with cognitive impairment
  • Parents of patients between age 4 and 7
  • Experts on CBS deficiency
  • Able to give informed consent as documented by signature

Exclusion criteria

  • Sufficient command of the German or the English language

Study details
    Homocystinuria

NCT06556615

University Children's Hospital, Zurich

21 April 2025

Contact a study center
Step 1 Get in touch with the nearest study center
We have submitted the contact information you provided to the research team at {{SITE_NAME}}. A copy of the message has been sent to your email for your records.
Would you like to be notified about other trials? Sign up for Patient Notification Services.
Sign up

Send a message

Enter your contact details to connect with study team

Investigator Avatar

Primary Contact

  Other languages supported:

First name*
Last name*
Email*
Phone number*
Other language

FAQs

Learn more about clinical trials

What is a clinical trial?

A clinical trial is a study designed to test specific interventions or treatments' effectiveness and safety, paving the way for new, innovative healthcare solutions.

Why should I take part in a clinical trial?

Participating in a clinical trial provides early access to potentially effective treatments and directly contributes to the healthcare advancements that benefit us all.

How long does a clinical trial take place?

The duration of clinical trials varies. Some trials last weeks, some years, depending on the phase and intention of the trial.

Do I get compensated for taking part in clinical trials?

Compensation varies per trial. Some offer payment or reimbursement for time and travel, while others may not.

How safe are clinical trials?

Clinical trials follow strict ethical guidelines and protocols to safeguard participants' health. They are closely monitored and safety reviewed regularly.
Add a private note
  • abc Select a piece of text.
  • Add notes visible only to you.
  • Send it to people through a passcode protected link.