RECRUITING

Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

The goal of this observational study is to help us understand more about the best ways to help individuals living with Sickle Cell Disease (SCD) get the best care. The main question it aims to answer is: How to find individuals unaffiliated from SCD specialist care use three distinct pathways? Once unaffiliated individuals are found using the pathways, Investigators will employ linkage coordinators (trained staff) to engage these patients in care. Participants will be asked to fill out an assessment survey which will cover areas such as previous and current treatment, clinic and hospital experience, pain, and quality of life. Participants will also be given the option of participation in a 1-hour long interview how they feel about treatment for sickle cell disease including clinic experience, pain, and quality of life?

Official Title

Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease

Quick Facts

Study Start:2023-06-08
Study Completion:2027-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06385886

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Persons must be \>/= 18 years of age
  2. * Persons must have confirmed SCD
  3. * Persons not seen by a SCD specialist \> 1 year +/- 3 months
  4. * Literacy in English will be required of the consenting patient or parent/guardian
  1. * Persons \< 18 years of age
  2. * Persons that are unable to provide informed consent and do not have a designated care-giver that can consent on his/her behalf
  3. * Persons with sickle cell trait (as per hemoglobin electrophoresis)
  4. * Persons seen by a SCD specialist \< 1 year +/1 3 months

Contacts and Locations

Study Contact

Lisa A Cox, MS
CONTACT
770-407-4908
lacox@rti.org
Sara Jacobs, PhD
CONTACT
770-407-4951
sjacobs@rti.org

Principal Investigator

Julie Kanter, MD
PRINCIPAL_INVESTIGATOR
University of Alabama, Birmingham (UAB)

Study Locations (Sites)

University of Alabama, Birmingham (UAB)
Birmingham, Alabama, 35233
United States
University of California, San Francisco (UCSF)
Oakland, California, 94609
United States
Augusta University
Augusta, Georgia, 30901
United States
University of Illinois
Chicago, Illinois, 60612
United States

Collaborators and Investigators

Sponsor: RTI International

  • Julie Kanter, MD, PRINCIPAL_INVESTIGATOR, University of Alabama, Birmingham (UAB)

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2023-06-08
Study Completion Date2027-12

Study Record Updates

Study Start Date2023-06-08
Study Completion Date2027-12

Terms related to this study

Keywords Provided by Researchers

  • Sickle Cell Disease Care
  • Unaffiliated patients
  • Linkage Coordinator

Additional Relevant MeSH Terms

  • Sickle Cell Disease