Rare Group Problem Management Plus
Launched by CHILDREN'S NATIONAL RESEARCH INSTITUTE · Aug 5, 2024
Trial Information
Current as of July 09, 2025
Recruiting
Keywords
ClinConnect Summary
This clinical trial is studying a special program called Rare Group Problem Management Plus, designed to support parents or guardians of children with rare conditions. If you are an adult caregiver (18 years or older) of a child between the ages of 1 and 21 who has a rare disease, you may be eligible to participate. The program aims to help caregivers manage practical and emotional challenges by connecting with others in similar situations, meeting once a week for five weeks in a group setting.
Participants will take part in assessments before starting the program and again a few weeks after completing it. These assessments are simple and should only take about an hour. The sessions will be conducted through telemedicine, which means you can join from home using a smartphone or tablet—don’t worry if you don’t have one, as the study team will assist you. Please note that there is no payment, materials, or medication provided for participating in this trial.
Gender
ALL
Eligibility criteria
- 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.
About Children's National Research Institute
Children's National Research Institute is a leading pediatric research organization dedicated to advancing the understanding and treatment of childhood diseases. As an integral part of Children's National Hospital, the institute focuses on innovative clinical trials and translational research that aim to improve health outcomes for children. Through collaborations with academic institutions, industry partners, and community organizations, the institute fosters a multidisciplinary approach to research, emphasizing safety, ethical standards, and the integration of cutting-edge technology in pediatric care. With a commitment to addressing the unique health challenges faced by children, Children's National Research Institute strives to translate research findings into effective therapies and interventions that enhance the quality of life for young patients.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Washington, District Of Columbia, United States
Patients applied
Trial Officials
Maureen Lyon, PhD
Principal Investigator
Children's National Research Institute
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported