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Internet Support Group for Parents of a Child With Neurofibromatosis Type 1

NCT02153931 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 33

Last updated 2019-01-31

No results posted yet for this study

Summary

Background:

\- Studies show that Internet Support Groups (ISGs) can help parents of children with chronic conditions. Researchers want to find out if ISGs can help parents of a child with the genetic disorder Neurofibromatosis Type 1 (NF1).

Objective:

\- To see if an ISG for parents with a child with NF1 can give the parents more social support and less anxiety.

Eligibility:

\- Adults age 18 and older with a child (age 0 25 years) with NF1.

Design:

* Participants will register for the study on a website hosted by the Children s Tumor Foundation.
* Participants will complete 5 questionnaires. These will be about their emotional well-being, their child s health status, and their contact information.
* The ISG will include a Discussion Forum that participants can enter 24 hours a day, 7 days a week. A professional moderator will post questions and discussion topics. The moderator can also respond to questions. They will be a psychologist, a psychology associate, or a nurse-practitioner. Each one will be highly experienced at working with young people with NF1 and their families.
* The ISG also will contain a chat room. Here participants can chat with other users in real time. The chat room will be open for one 90-minute session per week.
* The ISG will remain open for 8 weeks. Then participants will retake 4 of the questionnaires from the beginning of the study. They will also complete 1 other questionnaire about their experiences with the ISG. Information from any messages participants post on the ISG website will be collected.
* Three months after the ISG closes, participants will complete the questionnaires one final time.

Conditions

  • Neurofibromatosis 1

Sponsors & Collaborators

  • National Cancer Institute (NCI)

    lead NIH

Principal Investigators

  • Staci M Peron, Ph.D. · National Cancer Institute (NCI)

Eligibility

Min Age
18 Years
Max Age
99 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2014-05-31
Primary Completion
2015-04-06
Completion
2019-01-29

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02153931 on ClinicalTrials.gov