Neoplasms

Nervous System Diseases

Diseases and Abnormalities at or Before Birth

All Conditions

Ear, Nose, and Throat Diseases

Symptoms and General Pathology

Skin and Connective Tissue Diseases

Rare Diseases

Neurofibromatoses

Neurofibromatosis 1

Neurofibroma

Neurofibromatosis 2

Nerve Sheath Neoplasms

Neoplasms, Nerve Tissue

Neoplasms by Histologic Type

Syndrome

Neoplastic Syndromes, Hereditary

Neurocutaneous Syndromes

Heredodegenerative Disorders, Nervous System

Neurodegenerative Diseases

Genetic Diseases, Inborn

Peripheral Nervous System Diseases

Neuromuscular Diseases

Nervous System Neoplasms

Peripheral Nervous System Neoplasms

Neuroma

Neuroma, Acoustic

Neurilemmoma

Neuroendocrine Tumors

Neuroectodermal Tumors

Neuroectodermal Tumors, Primitive

Neoplasms, Germ Cell and Embryonal

Vestibulocochlear Nerve Diseases

Retrocochlear Diseases

Ear Diseases

Otorhinolaryngologic Diseases

Otorhinolaryngologic Neoplasms

Cranial Nerve Diseases

Neurofibromatosis

Neurofibromatosis Type 1

Neurofibromatosis Type 2

Schwannoma

Neuroendocrine Tumor

Neuroepithelioma

Subjects will attend group stress management sessions via Skype once weekly for 8 weeks and learn stress/NF symptoms managements techniques.

Stress Management Group 1

Stress Management Group 2

Ana-Maria Vranceanu, PhD

The aim of this study is to determine, whether the 3RP is feasible, accepted and efficacious and durable when delivered via Skype to patients with neurofibromatosis type 2 (NF2) who are deaf or have severe hearing loss using Communication Access Realtime Translation (CART) and/or American Sign Language (ASL).

This will be a substudy of the IRB-approved protocol #2013P002605. It is the same study except it is looking at a particular sub-population: patients with NF2 who are hard of hearing.

Resiliency Training for Patients With NF2 Via Videoconferencing With Skype

Resiliency Training for Patients With Neurofibromatosis Via Videoconferencing With Skype

Measures how likely and how motivated the participants is to attend the next session.

This questionnaire asks subjects with NF2 to report their date of birth, age, gender, race, ethnicity, marital status, highest level of education, hearing status, and primary employment status over the last 12 months.

Measures how much the participant believes the intervention will work.

Measures how satisfied the participant is with the intervention.

The WHOQOL-BREF comprises of 26 items which measure the following broad domains: physical health, psychological health, social relationships, and environment. The WHOQOL-BREF is a shorter version of the original instrument that may be more convenient for use in large research studies or clinical trials.

The PANQOL measures quality of life specifically for patients with NF2.

The PSS is a widely used psychological instrument for the measurement of the perception of stress. This 10-itam scale is designed to measure the degree to which situations in one's life are appraised, or considered stressful. The scores range from 0-40, with a higher score indicating higher perceived stress. Items were designed to detect how unpredictable, uncontrollable and overloaded respondents find their lives.

The RS-14 measures stress coping ability in the face of adversity.

The PHQ measures symptoms of depression and functional impairment.

The CAMS measures the degree to which individuals experience their thoughts and feelings.

The LOT Optimism Scale measures individual differences in generalized optimism versus pessimism.

The GQ-6 revised is a 6-item measure that assesses individual differences in the proneness to experience gratitude in daily life. Scores range from 6-42, with a higher score indicating a greater sense of gratitude.

The MOCS-A is a 13-item measure assessing participants' current self-perceived status on several skills such as: the ability to relax at will, recognize stress-inducing situations, restructure maladaptive thoughts, be assertive about needs, and choose appropriate coping responses as needed. Responses are made on a 7-point scale with higher scores reflecting higher life satisfaction.

The MOS Social Support Survey measures various dimensions of social support.

The Children's Tumor Foundation

Massachusetts General Hospital

Clinical Psychologist

Blood and Lymph Conditions

Leukemia

Hematologic Diseases

Children with leukemia and their families/caregivers.

Questionnaires administered to pediatric patients and their parent(s) or caregiver(s).

Questionnaire

Martha Askins, PhD

Overall Objective:

The overall objective of this cross-sectional psychosocial study is to examine illness-related factors, family context factors, and child resiliency as predictors or correlates of child adjustment to leukemia treatment.

Primary Objective 1:

1(a): To examine illness-related factors (i.e., child's health and physical functioning and severity of the child's illness) as predictors of child psychological adjustment to leukemia.

1(b): To examine relapse status as a grouping variable affecting child psychological adjustment to leukemia.

1(c): To examine stage of treatment as a grouping variable affecting child psychological adjustment to leukemia.

Primary Objective 2:

-To examine family context factors (i.e., family psychosocial risk and parental emotional distress) as correlates of child psychosocial adjustment to leukemia treatment.

Primary Objective 3:

-To examine child resiliency as a predictor of child psychological adjustment to leukemia treatment.

Secondary Objectives:

* One secondary objective of the study is to examine parental distress as a moderator affecting parental report of child adjustment to leukemia as compared to the child's self-report of adjustment.
* Another secondary objective of the study is to develop a model by which the relative contribution of each predictor variable (as determined by analyses of primary objectives) as well as their interrelatedness can be understood in relation to child psychosocial adjustment.
* A third secondary objective of the study is to examine demographic variables as covariates in the main analyses. These variables include: age, grade, site, gender, ethnicity, type of leukemia, staging, time spent in treatment, age at diagnosis, and whether the child is undergoing standard or experimental treatment.

Parental Consent/Child Assent for Child Participants:

If you choose to take part in this study, you will be asked to complete a total of 2 or 3 questionnaires (depending on your age). Each questionnaire will be completed only once.

If you are between 6-7 years old, you will be given 2 questionnaires asking you about your physical health and illness, and your personal strengths. These questionnaires will take you about 30-45 minutes to finish. If you are between 8-18 years old, you will be given 3 questionnaires that will ask you about your physical health and illness, your personal strengths, and your emotional adjustment to the disease. These 3 questionnaires will take you about 30-45 minutes in total to finish. A research assistant will help you with the questionnaires, if you need help.

If you are given the questionnaires while you are at the hospital and you cannot complete them before you leave, you will be given a stamped envelope to mail the forms back to the study staff.

After your questionnaires are finished, a member of the research team might look at your medical chart if they need more information about your treatment or the status of the disease.

Parent Participants:

If you choose to take part in this study, you will be asked to complete a total of 5 questionnaires. These questionnaires ask information about your child's emotional adjustment to the disease, your child's physical health and illness, your child's personal strengths, your emotional distress, and the overall functioning of your family. Each questionnaire will be completed only once. It will take about 45-60 minutes to complete all 5 questionnaires.

Medical Staff Participants:

If you choose to take part in this study, you will be asked to complete a questionnaire that asks for information about the patient's illness. It will take about 3-5 minutes to complete this one-time survey.

All Groups:

This is an investigational study. About 220 people (100 children, 100 parents, and 20 medical staff) will take part in this multicenter study. About 130 will be enrolled at M. D. Anderson (60 children, 60 parents, and 10 medical staff members).

Children's Resiliency, Adjustment, and Coping

Children's Resiliency, Adjustment, and Coping: Cancer-Related, Family Context, and Within-Child Factors

M.D. Anderson Cancer Center

Schwannomatosis

Participants will receive an 8-week behavioral intervention which teaches stress management and psychological resiliency-enhancing skills.

Participants will receive and 8-week general stress and health education program, with none of the active relaxation and resiliency-based components being tested in the experimental condition.

8-week group intervention, delivered via Skype, teaching relaxation and psychological resiliency enhancing skills. Topics include the relaxation response, meditation, and yoga.

The Relaxation Response Resiliency Program (3RP) via Skype

This study tests the efficacy of an 8-week, Skype-based, group resiliency training intervention (The Relaxation Response Resiliency Program) for improving psychological stress in patients with Neurofibromatosis. A control group will receive a general health education curriculum. The investigators hypothesize that patients will improve on measures of psychological stress as a result of the resiliency program.

A substudy (Unique Protocol ID: 2013P002605b) has been approved to test this study on a sub-population: patients with NF2 who are hard of hearing.

The Satisfaction with Life (SWL) scale is a reliable and valid 5-item self-report measure of global life satisfaction. Responses are made on a 7-point scale with higher scores reflecting higher life satisfaction.

The Pain Catastrophizing Scale (PCS) is widely used to assess cognitive and affective responses to pain and to evaluate pain management program outcomes.

The Pain NRS is a scale for patient self-reporting measurements of pain. The measure was depicted by REINS as a standard measure to use in Neurofibromatosis clinical trials.

The Brief Pain Inventory (BPI) allows patients to rate the severity of their pain (BPI-S) and the degree to which their pain interferes with common dimensions of feeling and function (BPI-I).

The PGI is an instrument for assessing positive outcomes reported by persons who have experienced traumatic events.

The IRI assesses the cognitive and affective dimensions of empathy.

The Distress Analogue Scales measure participants' levels of stress, coping, distress, and discomfort.

The Epworth Sleepiness Scale (ESS) has been widely used to assess a person's average level of daytime sleepiness in daily life.

The FACIT-Fatigue measures participants' tiredness, weakness, and difficulty conducting usual activities due to fatigue.

The FACIT-Sp measures participants' spiritual well-being (sense of meaning in life and the sense of strength in one's faith) over the past 7 days.

Immune System Diseases

Leukemia, Myeloid

Leukemia, Myeloid, Acute

Preleukemia

Myelodysplastic Syndromes

Lymphoma

Hematologic Neoplasms

Lymphoproliferative Disorders

Lymphatic Diseases

Immunoproliferative Disorders

Bone Marrow Diseases

Myeloid Leukemia

Acute Myeloid Leukemia

Acute Non Lymphoblastic Leukemia

Lymphosarcoma

Acute Graft Versus Host Disease

Study visits will include the performance of assessments prior to the start of conditioning chemotherapy and at 1 month and 6 months post-BMT. Assessments include:

1. Physical function assessments
2. questionnaires about general health and current health compared to health one year ago
3. assessments that measure cognition, attention and memory
4. assessments regarding personality and psychological and social stressors
5. Physiological measures including

   * blood tests- 160 mL of blood during evaluations, and 90mL of blood at the day 180 visit.
   * bone marrow aspirate collected during standard of care bone marrow biopsies pre-transplant and at day 180
   * Saliva collections pre-transplant
   * ACTH Stimulation Test
   * Oral Glucose Tolerance Test
   * Holter Monitor- to record hear rate variability
   * MRI pre-transplant and at Day 180 in a subset of 10 subjects

Bone marrow transplantation will be conducted according to the investigators' institution's standard of care, or else according to research protocol (if applicable).Study visits that include the performance of assessments will occur prior to the start of conditioning chemotherapy and at 1 month and 6 months post-BMT. All dates are +/- 7 days. The initial study visit will take place during standard of care pre-transplant evaluations, which typically span 3-4 days. The post-BMT visits will take place before or after regularly-scheduled BMT follow up.

Bone Marrow Transplant (BMT)

Philip Imus, MD

The objective of this research is to measure certain indicators of resiliency to better understand which participants who are over 60 years old will respond more positively to bone marrow transplant. This research is being done to determine if there are traits that make recipients more likely to bounce back following allogeneic bone marrow transplant (BMT).

Allogeneic blood and marrow transplantation (alloBMT) is the only potentially curative therapy for many forms of leukemia, lymphoma, and other hematologic malignancies. As with many forms of cancer, many of the most common indications for alloBMT disproportionally affect older people. Although treatments have improved for older adults undergoing therapies for these diseases, the outcomes are variable and there is little biological knowledge to help identify specific factors that would predict why some people do well with treatment and others develop functional and cognitive decline and other adverse health outcomes.

Data specific to patients older than 60 who have undergone alloBMT are sparse even though the 1 year non-relapse mortality rate in patients older than age 50 at Johns Hopkins is 12%. In none of these studies have geriatric assessment measures in domains such as cognition and function been evaluated. Given the low incidence of non-relapse mortality in the investigators' older patients, the investigators have a unique opportunity to study the factors that influence not only mortality but function after hematopoietic stem cell transplantation. The investigators aim to be able to counsel patients more specifically about likely outcomes after transplant.

Age ≥60 years who are undergoing allogeneic bone marrow transplant at Johns Hopkins Hospital to treat a hematologic malignancy

Resiliency in Older Adults Undergoing Bone Marrow Transplant

REBOUND: REsiliency in Older Adults UNDergoing BOne Marrow Transplant - A Pilot Study of Resiliency Measures in Older Patients Undergoing Allogeneic Blood and Marrow Transplant

5 measured criteria: unintentional weight loss, exhaustion, low energy expenditure, low grip strength, and slowed waking speed. Scores of 3, 4 and 5 are consistent with frailty, scores of 1 and 2 are consistent with pre-frailty status, and a score of 0 is consistent with a robust or resilient status.

questions about ability to perform activities of daily living (IADL). Scored low functioning (0) to high functioning (8).

device worn on wrist for a 24hr period that measures physical activity and sedentary activity. Higher scores= more active.

Changes in catecholamines level will be assessed in overnight urine collection samples. Levels fluctuate. Analysis will use the Johns Hopkins University (JHU) normal reference range for an adult is Metanephrine (normotensive):45-290 μg/24 hours. Metanephrine (hypertensive): 35-460 μg/24 hours .

Frailty Phenotype instrument is used to measure participants' walking speed and grip strength, includes questions about exhaustion, physical activity, weight loss. Higher scores indicate better functional state.

self-report tool that normalizes activities in terms of intensity and duration (PFS) this has a range of 0-50 with higher scores indicating greater physical fatigability.

scale will be used immediately after a slow-paced 5-minute treadmill walk to assess fatigability (RPE). Higher score indicates higher perceived exertion.

Questionnaire of past medical history as reported by a subject. This questionnaire does not have a score.

This assessment is of self determined overall health as reported by a participant, it has no score.

Questionnaire includes items on hospitalizations, surgeries, and falls. it has no score.

questions on overall bodily pain intensity/frequency and pain-related function/interference. Higher scores equal more pain.

Questions to assess the presence and severity of anxiety; higher scores = more anxiety.

Questions to assess a participants reporting of any past experiences of several kinds of trauma. It has no score.

measure of global cognitive function (range 0-100). A score of 100 represents total cognitive function according to 3MS.

measures global cognitive function (MoCA). Scores range between 0 and 30. A score of 26 or over is considered to be normal.

participant fill in a series of symbols correctly coded within 90 seconds. The higher the score, the better the participant's performance.

11-point Likert scale measures perceived ability to cope effectively with life. Scale is 0-10 with 10 = best ability to cope and 0 = no ability to cope.

7-item Likert type scale (from strongly disagree to strongly agree) measures sense of direction and perception of purpose. Scale is 0-7 with 7 = best sense of well-being and 0 = no sense of well-being.

Likert-type scale measuring perception of meaning and satisfaction with life (MLQ) Scale is 0-7 with 7 = best sense that life has meaning and 0 = no sense that life has meaning.

7 point Likert-type scale of disagree to agree with various aspects of personality measuring: extraversion, agreeableness, neuroticism, openness, conscientiousness. TIPI scale scoring. Extraversion: 1, 6R; Agreeableness: 2R, 7; Conscientiousness; 3, 8R; Emotional Stability: 4R, 9; Openness to Experiences: 5, 10R. ("R" denotes reverse-scored items)

5 point Likert scale, assessing optimism. 0= strongly disagree; 4 = strongly agree. The total score is from 0 to 24; higher scores indicate more optimism.

Revised University of California, Los Angeles (UCLA) Loneliness Scale. Each question is rated on a 4-point scale: 1 = never; 2 = Rarely; 3 = Sometimes 4 = Always. All items are summed to give a total score. Higher scores indicate more loneliness

10-rung ladder to assess a participant's perception of participant's status in society. To score this measure, researchers simply note the number of the rung (1-10) on which the respondent placed their "X".

2 item measure evaluating difficulty and anxiety about money. Higher scores equal higher financial strain.

Participants rate their community by rate of agreement. Response is Agree a lot, a little, do not agree with 3 statements about their community.

7-item measure evaluating social isolation, participation and engagement with others. Higher scores= greater sense of isolation.

5-Item measure for use in epidemiological studies regarding spirituality. Score range from 5-27, with higher scores = more sense of spirituality

Measures depressive symptoms in the last 2 weeks (PHQ-8)

10-item measure to assess childhood abuse and household dysfunction. Response is yes/no. The ACE Scale is scored by summing the number of items for which respondents answered "yes."

5-point Likert scale measures the cognitive appraisal and perceptions of stress in life. Higher score= high level of perceived stress.

aspirate will be collected during standard of care bone marrow biopsies and analyzed using JHU normal reference ranges.

160 mL of blood during evaluations, and 90mL of blood at the day 180 visit. Assessment will be documents using Hopkins normal reference ranges

Saliva collected at home by participants at 4 time points during a single 24 hour period. The mean salivary cortisol concentration is 15.5 +/- 0.8 nmol/L (range, 10.2-27.3) at 0800 h and 3.9 +/- 0.2 nmol/L (range, 2.2-4.1) at 2000 h.

This is part of the ACTH Stimulation test to assess the reactivity of hypothalamic-pituitary-adrenal (HPA) axis. Test After the baseline blood draw is taken, 1mcg (low dose) Cosyntropin (synthetic ACTH) will be given intravenously by a research nursing staff followed by serial blood sampling to test for cortisol levels (mcg/dL).

This is part of the ACTH Stimulation test to assess the reactivity of HPA axis. After the baseline blood draw is taken, 1mcg (low dose) Cosyntropin (synthetic ACTH) will be given intravenously by a research nursing staff followed by serial blood sampling to test for IL-6 levels (pg/ml).

This is part of the ACTH Stimulation test to assess the reactivity of HPA axis. After the baseline blood draw is taken, 1mcg (low dose) Cosyntropin (synthetic ACTH) will be given intravenously by a research nursing staff followed by serial blood sampling to test for DHEA levels (µg/dL).

Participants will fast overnight and then be given the 75 gram glucose oral load followed by blood draws at 0, 30. 60 and 120 minutes. At 120min, below 140mg/dL= normal blood sugar. 200mg/dL or higher= diabetes

lightweight digital device that records and stores electrocardiogram (ECG) data on a continuous basis during study visits. A normal resting heart rate for adults ranges from 60 to 100 beats per minute. Generally, a lower heart rate at rest implies more efficient heart function.

Measures attention and inhibitory control. Scoring is 0-10. Details and interpretations are available in the NIH toolbox scoring and interpretation guide.

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Resiliency Training for Patients With NF2 Via Videoconferencing With Skype	NCT02811718	Neurofibromatos...	Stress Manageme... Stress Manageme...	18 Years -	Massachusetts General Hospital
Children's Resiliency, Adjustment, and Coping	NCT00489632	Leukemia	Questionnaire	6 Years - 18 Years	M.D. Anderson Cancer Center
Children's Resiliency, Adjustment, and Coping	NCT00489632	Leukemia	Questionnaire	6 Years - 18 Years	M.D. Anderson Cancer Center
Resiliency Training for Patients With Neurofibromatosis Via Videoconferencing With Skype	NCT02298270	Neurofibromatos... Neurofibromatos... Neurofibromatos... Schwannomatosis	The Relaxation ...	18 Years -	Massachusetts General Hospital
Resiliency in Older Adults Undergoing Bone Marrow Transplant	NCT04188678	Leukemia Lymphoma Blood Cancer Myelodysplastic... Acute Myelogeno... Non-Hodgkins Ly...	Bone Marrow Tra...	60 Years -	Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
Resiliency Training for Patients With Neurofibromatosis Via Videoconferencing With Skype	NCT02298270	Neurofibromatos... Neurofibromatos... Neurofibromatos... Schwannomatosis	The Relaxation ...	18 Years -	Massachusetts General Hospital
Resiliency Training for Patients With Neurofibromatosis Via Videoconferencing With Skype	NCT02298270	Neurofibromatos... Neurofibromatos... Neurofibromatos... Schwannomatosis	The Relaxation ...	18 Years -	Massachusetts General Hospital

Spots Global Cancer Trial Database for resiliency

Every month we try and update this database with for resiliency cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Spots Global Cancer Trial Database for resiliency

Every month we try and update this database with for resiliency cancer trials from around the world to help patients and their families find trials that might be right for them. We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Every month we try and update this database with for resiliency cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.