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New online program aims to ease anxiety for parents of kids with rare diseases

NCT ID NCT06548022

Symptom relief Sponsor: Children's National Research Institute Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study tested a 5-week online group program called Rare Group Problem Management Plus (PM+) for parents of children with rare diseases. The program teaches stress management and problem-solving skills to help reduce anxiety, depression, and distress. Eight parents participated, and the study measured how many stayed in the program to see if it was acceptable and helpful.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
Rare Group Problem Management Plus (Group PM+)
What this could lead to
If it works, this could offer a practical, online way to reduce stress and anxiety for parents caring for children with rare diseases.
What could go wrong
This is a very small, completed study with only 8 participants and no control group, so results may not apply to all caregivers. The program is behavioral, not a medical treatment.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Phase

Not a phased trial

Phase numbers describe drug development. The registry uses this when they do not apply, as it does for trials of devices, procedures or behaviour changes, and for observational studies.

Participants

8 people

The number who actually took part.

Started

Feb 2024

Finished

Nov 2025

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Ages

18 to 99 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * • Family caregiver aged 18 years or older of a child with a rare disease from infancy to age 21 years. * Understands and speaks English or Spanish. Reading or health literacy is not required. * Signed consent. * Signed waiver of assent for child. Exclusion Criteria: * Family caregiver is under the age of 18 years. * Child with the rare disease is over the age of 21 years. * Family caregiver is actively suicidal, homicidal, or psychotic. * Family caregiver is impaired (cognitively or by drugs or alcohol). * Family caregiver has a low level of distress.

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Conditions

The condition(s) this trial relates to.

anxiety anxiety disorder Depression post-traumatic stress disorder Rare Diseases

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Anxiety Depressive symptoms Post traumatic stress disorder Problems psychosocial

Contacts and locations

Locations

  • Children's National Hospital

    Washington D.C., District of Columbia, 20010, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.