Image

Parental Experiences with Healthcare Providers During the Diagnostic Process for Rett Syndrome

Parental Experiences with Healthcare Providers During the Diagnostic Process for Rett Syndrome

Recruiting
18 years and older
All
Phase N/A

Overview

Did you have a long diagnostic journey to receive your child’s Rett syndrome diagnosis? How did you feel about the care you received from healthcare providers during this journey? We are looking to investigate the diagnostic process for Rett syndrome from parental perspectives and explore experiences with healthcare providers throughout this journey. We want to learn from you and your experiences to provide feedback to healthcare providers to improve the diagnosis process for Rett syndrome.

Participation in this study will involve one Zoom interview with a researcher. The interview will last approximately 30 minutes.

Description

To view the informed consent form and sign up for an interview slot through Calendly, select the below link.

https://ku.co1.qualtrics.com/jfe/form/SV_eg63Vv8DUpPR8Tc

 

Study contact
Audra Vanroboys
vanroboa@kean.edu
513-461-9830

Eligibility

This study is available to parents of children with Rett syndrome in the United States. Participants’ children can present with typical or atypical Rett syndrome. Participants’ children must have received their diagnosis in or after 2019. Participants must be at least 18 years of age.

Print
Study details
    Rett syndrome

Kean University

24 October 2024

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

Email

View email

Phone

Phone country flag

View phone
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.