TANDem-2: Closing the Gap to Interventions for TAND

NCT ID: NCT06879665

Last Updated: 2025-09-22

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

ENROLLING_BY_INVITATION

Clinical Phase

NA

Total Enrollment

30 participants

Study Classification

INTERVENTIONAL

Study Start Date

2025-07-15

Study Completion Date

2027-07-15

Brief Summary

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The goal of this pilot study is to determine the feasibility, acceptability and impact of a brief behavioral intervention - the "Well-Beans for Caregivers" program, for adult caregivers of individuals with tuberous sclerosis complex (TSC) of any age. The main questions of the study are:

1. Can this innovative, ultra-brief caregiver well-being intervention be delivered feasibly to caregivers via an online modality?
2. How do the caregivers experience the program (acceptability)?
3. Does limited efficacy testing suggest the program has an impact on caregiver's well-being?

Detailed Description

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The investigators hypothesize that an innovative, ultra-brief caregiver wellbeing intervention developed for caregivers of children with developmental disabilities can be adapted as a universal caregiver wellbeing intervention in tuberous sclerosis complex (TSC), that it can be delivered feasibly in an online modality, and will result in changes in key caregiver wellbeing factors. To test these hypotheses, the researchers will adapt the 3-session 'Well-Beans for Caregivers' program through a participatory method with the TAND consortium (the TAND consortium is an international group of clinical and research professionals as well as family members living with individuals with TSC - TAND stands for TSC-Associated Neuropsychiatric Disorders - see tandconsortium.org). The input from the TAND Consortium will be augmented by members of TSCi (Tuberous Sclerosis International), the global network of TSC non-profit organizations.

For step 2 (pilot intervention), two specialist facilitators and four trainee observers will deliver the 3-session program using ZoomPro, a secure online platform to two groups of 10-12 caregivers. Caregivers are those who provide long-term, day-to-day support and care, and this group includes parents, partners, relatives, or other family members (not paid professional caregivers). These sessions will not be recorded to ensure that participants can join the program without feeling concerned about being recorded. Data collection will use a quasi-experimental pre-post-test design. Eligible and consented participants will therefore complete baseline data as 'pre-test' and then 'post-test' data after the 3-week intervention. Following this, they will complete 3-month and 6-month data collection. Caregiver wellbeing measures will only include open access and freely available measures. The program as well as data collection will be conducted in English.

Conditions

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Adult Caregivers of Individuals With TSC Tuberous Sclerosis Complex (TSC)

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

TREATMENT

Blinding Strategy

NONE

Study Groups

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Feasibility of "Well-Beans for Caregivers"

Pre-post- quazi-experimental pilot intervention of the feasibility, acceptability and impact of the "Well-Beans for Caregivers" Program

Group Type OTHER

Well-Beans for Caregivers Program

Intervention Type BEHAVIORAL

This is a brief behavioral intervention consisting of 3 weekly 2-hour sessions. The sessions are based on Acceptance and Commitment Therapy (ACT) and are designed to improve psychological flexibility in caregivers. This in turn is designed to help them connect with their difficult emotions and experiences in a flexible way, and improve emotional well-being.

Interventions

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Well-Beans for Caregivers Program

This is a brief behavioral intervention consisting of 3 weekly 2-hour sessions. The sessions are based on Acceptance and Commitment Therapy (ACT) and are designed to improve psychological flexibility in caregivers. This in turn is designed to help them connect with their difficult emotions and experiences in a flexible way, and improve emotional well-being.

Intervention Type BEHAVIORAL

Eligibility Criteria

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Inclusion Criteria

* Adult caregiver of an individual with Tuberous Sclerosis Complex (TSC) of any age

Exclusion Criteria

* Not an adult caregiver of an individual with TSC
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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University of Cape Town

OTHER

Sponsor Role collaborator

United States Department of Defense

FED

Sponsor Role collaborator

Vrije Universiteit Brussel

OTHER

Sponsor Role lead

Responsible Party

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Prof Anna Jansen

Professor

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Anna Jansen, MD, PhD

Role: PRINCIPAL_INVESTIGATOR

Vrije Universiteit Brussel

Petrus J de Vries, MD PhD

Role: PRINCIPAL_INVESTIGATOR

University of Cape Town

Locations

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TSC Alliance

Silver Spring, Maryland, United States

Site Status

Tuberous Sclerosis Australia

Beverly Hills, New South Wales, Australia

Site Status

Countries

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United States Australia

References

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Schlebusch L, Chambers N, Rosenstein D, Erasmus P; WHO CST Team; de Vries PJ. Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa. Autism. 2024 Jan;28(1):199-214. doi: 10.1177/13623613221133182. Epub 2022 Nov 9.

Reference Type BACKGROUND
PMID: 36352758 (View on PubMed)

Other Identifiers

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HT94252410790

Identifier Type: OTHER_GRANT

Identifier Source: secondary_id

HT94252410791

Identifier Type: OTHER_GRANT

Identifier Source: secondary_id

327/2024

Identifier Type: OTHER_GRANT

Identifier Source: secondary_id

EC-2024-222

Identifier Type: -

Identifier Source: org_study_id

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