Clinical trials: Neurofibromatoses
Neurofibromatosis Type 1 (NF1), NF2-related Schwannomatosis
How Can the Experience of Hospital Outpatient Departments be Improved?
This project aims to improve outpatient departments by working with patients and staff to make these spaces more inclusive for people with sensory challenges (it focuses on people with nerve tumour conditions as they are more…
- Trial name
- NCT07818213
- Testing
- Qualitative data collection activities
- Where
- United Kingdom
- Volunteers
- 30 people, healthy volunteers welcome
- Sponsor
- King's College London
Neurofibromatoses
Resiliency Training in Adolescents With NF1 and NF2
This randomized controlled trial for resiliency training in adolescents with Neurofibromatosis 1 and Neurofibromatosis 2 via secure live video to determine the efficacy two stress and symptom management programs.
- Trial name
- NCT03873610
- Testing
- Stress and Symptom Management Program 1, Stress and Symptom Management Program 2
- Where
- United States
- Volunteers
- 196 people, healthy volunteers welcome
- Sponsor
- Massachusetts General Hospital
Parenting, Alopecia
Mindful Parenting - A Single Case Experimental Design Study
Some parents of children living with a visible difference can experience heightened stress due to the associated challenges of this. Parent's views of the child's visible difference and their responses to the child are important.
- Conditions
- Parenting, Alopecia, Skin Condition, Limb Difference
- Trial name
- NCT05779527
- Testing
- Mindful Parenting Programme
- Where
- United Kingdom
- Volunteers
- 12 people, healthy volunteers welcome
- Sponsor
- Cardiff University
Neurofibromatosis
Acceptance and Commitment Therapy for Adolescents and Young Adults With Neurofibromatosis and Chronic Pain
Background: Neurofibromatosis type 1 (NF1) is a genetic disorder that can cause frequent and significant pain. This pain can have a severe impact on a person s quality of life.
- Trial name
- NCT01633008
- Testing
- ACT Workshop
- Where
- United States
- Volunteers
- 28 people, healthy volunteers welcome
- Sponsor
- National Cancer Institute (NCI)
Neurofibromatoses
Resiliency Training for Adolescent Neurofibromatosis Patients Via Videoconferencing With Skype
The aim of this research is to adapt the NF-specific adult version of the Skype 3RP for use with adolescents, and to test its feasibility, acceptability, and preliminary effect in improving quality of life, and in decreasing…
- Trial name
- NCT02387177
- Testing
- Stress Management Group 1, Stress Management Group 2
- Where
- United States
- Volunteers
- 51 people, healthy volunteers welcome
- Sponsor
- Massachusetts General Hospital
Neurofibromatosis Type 1
Neurofibromatosis Type 1 Patient Registry
The Neurofibromatosis Type 1 (NF1) Patient Registry Initiative (NPRI) is a web-based registry that asks participants to fill out a 30-minute online questionnaire to collect information about the spectrum of medical and social…
- Trial name
- NPRI (NCT01410006)
- Where
- United States
- Volunteers
- 2,391 people, healthy volunteers welcome
- Sponsor
- Washington University School of Medicine
Neurofibromatosis
Relationship Between Psychosocial Factors, Health Literacy, Quality of Life and Satisfaction With Medical Visits in Adults With NF
This is a prospective study through the NF clinic at Massachusetts General Hospital that will examine the relationship between psychosocial factors, health literacy, and satisfaction with the medical visit in adults with NF1…
- Trial name
- NCT02435628
- Testing
- Questionnaires
- Where
- United States
- Volunteers
- 86 people, healthy volunteers welcome
- Sponsor
- Massachusetts General Hospital
Neurofibromatosis Type 1
How Neurofibromatosis Type 1 (NF1) Affects Schoolwork and Self-Esteem
The study will seek to determine whether there is a corresponding deficit in school performance for teenagers with NF1. Secondly, the study seeks to explore the issue of self-esteem in teenagers with NF1.
- Trial name
- NCT01626846
- Where
- United States
- Volunteers
- 50 people, healthy volunteers welcome
- Sponsor
- John Jay High School
Tuberous Sclerosis, Neurofibromatoses
Topical Rapamycin Therapy to Alleviate Cutaneous Manifestations of Tuberous Sclerosis Complex (TSC) and Neurofibromatosis I (NF1)
This study is a prospective, randomized, double-blind, placebo-controlled evaluation of the safety of a topically applied formulation of rapamycin to cutaneous fibromatous lesions in subjects with Tuberous Sclerosis Complex (TSC)…
- Conditions
- Tuberous Sclerosis, Neurofibromatoses, Angiofibroma, Neurofibroma
- Trial name
- NCT01031901
- Testing
- Skincerity, Skincerity plus sirolimus/rapamycin, Skinercity plus sirolimus/rapamycin
- Where
- United States
- Volunteers
- 52 people, healthy volunteers welcome
- Sponsor
- The University of Texas Health Science Center, Houston