Affiliation: National Institutes of Health
- Attitudes about internet support groups among adolescents and young adults with neurofibromatosis type 1 and their parentsStaci Martin
Pediatric Oncology Branch, National Cancer Institute, Building 82, Room 107 9030 Old Georgetown Road, Bethesda, MD, 20892 8200, USA
J Genet Couns 23:796-804. 2014..ISGs for the NF1 population should include patients with NF1 (or parents of children with NF1) as well as a health professional, and both chat rooms and discussion boards likely would be well-received...
- Neurobehavioral profiles in individuals with hyperimmunoglobulin E Syndrome (HIES) and brain white matter hyperintensitiesStaci Martin
Pediatric Oncology Branch, National Cancer Institute, Bethesda, MD, 20892, USA
J Clin Immunol 33:1175-84. 2013..This cross-sectional study aimed to describe the cognitive and emotional functioning and quality of life of people with HIES. We also sought to explore the relationship between cognitive functioning and WMHs in this population...
- Social-emotional functioning of children and adolescents with neurofibromatosis type 1 and plexiform neurofibromas: relationships with cognitive, disease, and environmental variablesStaci Martin
National Cancer Institute, Bethesda, MD 20892 8200, USA
J Pediatr Psychol 37:713-24. 2012..This descriptive cross-sectional study aimed to determine how cognitive, disease, and environmental variables relate to social-emotional functioning in youth with NF1 and plexiform neurofibromas...
- Family functioning and coping styles in families of children with cancer and HIV diseaseStaci Martin
National Cancer Institute, Bethesda, MD, USA
Clin Pediatr (Phila) 51:58-64. 2012..Researchers should avoid combining various illness groups indiscriminately. Likewise, clinicians should be sensitive to disease-specific factors when helping families learn to cope with illness-related stressors...
- Coping styles among families of children with HIV infectionS C Martin
HIV and AIDS Malignancy Branch, National Cancer Institute, Bethesda, MD 20892, USA
AIDS Care 16:283-92. 2004..Findings suggest the need to target families least likely to utilize resources, and to teach them to effectively seek out and benefit from social and community supports...
- Experiences of families with a child, adolescent, or young adult with neurofibromatosis type 1 and plexiform neurofibroma evaluated for clinical trials participation at the National Cancer InstituteStaci Martin
Pediatric Oncology Branch, National Cancer Institute, National Institutes of Health, Bethesda, MD 20892, USA
Contemp Clin Trials 32:10-5. 2011..However, little is known about the experiences of families with children with NF1 participating in clinical trials...
- A comparison of adherence assessment methods utilized in the United States: perspectives of researchers, HIV-infected children, and their caregiversStaci Martin
National Cancer Institute, Center for Cancer Research, Bethesda, Maryland, USA
AIDS Patient Care STDS 23:593-601. 2009..Most participants reported positive perceptions of their research experience. A consensus among researchers is needed for defining and measuring adherence, and specific recommendations are offered for achieving this goal...
- Cognitive functioning in school-aged children with vertically acquired HIV infection being treated with highly active antiretroviral therapy (HAART)Staci C Martin
HIV and AIDS Malignancy Branch, National Cancer Institute, 9030 Old Georgetown Road, Bethesda, MD 20814, USA
Dev Neuropsychol 30:633-57. 2006..Findings emphasize the importance of conducting neuropsychological assessments in this population, particularly for children with cortical atrophy and absolute CD4+ cell counts < or = 500...
- Adaptive and maladaptive behavior in children with Smith-Magenis SyndromeStaci C Martin
HIV and AIDS Malignancy Branch, National Cancer Institute, Bethesda, MD 20892 8200, USA
J Autism Dev Disord 36:541-52. 2006..Stereotypic and self-injurious behaviors were present in all children. Cognitive functioning was delayed and consistent with communication and daily living skills, while socialization scores were higher than IQ...
- The Antiretroviral Regimen Complexity Index. A novel method of quantifying regimen complexityStaci Martin
Center for Cancer Research, National Cancer Institute, National Institute of Allergy and Infectious Disease, National Institutes of Health, Bethesda, MD 20892 8200, USA
J Acquir Immune Defic Syndr 45:535-44. 2007..To date, regimen complexity has not been examined in the literature using standardized procedures incorporating all important elements of antiretroviral (ARV) regimens...
- Patient, caregiver and regimen characteristics associated with adherence to highly active antiretroviral therapy among HIV-infected children and adolescentsStaci Martin
HIV and AIDS Malignancy Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, USA
Pediatr Infect Dis J 26:61-7. 2007..We also examine the association of adherence to child and caregiver demographic characteristics and surrogate markers of HIV disease...
- Development and validation of the english pain interference index and pain interference index-parent reportStaci Martin
National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
Pain Med 16:367-73. 2015..This study investigated the psychometric properties of the Pain Interference Index (PII), a six-item questionnaire originally developed in Swedish, in chronically ill youth...
- Phase II trial of pirfenidone in children and young adults with neurofibromatosis type 1 and progressive plexiform neurofibromasBrigitte C Widemann
Pediatric Oncology Branch, National Cancer Institute, Bethesda, Maryland
Pediatr Blood Cancer 61:1598-602. 2014..The primary objective of this open label, single arm phase II trial was to evaluate the activity of pirfenidone in children and young adults with inoperable PN...
- Phase 2 randomized, flexible crossover, double-blinded, placebo-controlled trial of the farnesyltransferase inhibitor tipifarnib in children and young adults with neurofibromatosis type 1 and progressive plexiform neurofibromasBrigitte C Widemann
Pediatric Oncology Branch, National Cancer Institute, Bethesda, Maryland B W, E D, A G, P W, S M, E F, F B Cancer Therapy Evaluation Program, Investigational Drug Branch, National Cancer Institute, Bethesda, Maryland J W Biostatistics and Data Management Section, National Cancer Institute, Bethesda, Maryland S S Diagnostic Radiology Department, National Institutes of Health, Bethesda, Maryland N P The Children s Hospital of Philadelphia, Philadelphia, Pennsylvania J B, E F, F B Ann and Robert H Lurie Children s Hospital, Chicago, Illinois S G Department of Genetics, University of Alabama at Birmingham, South Birmingham, Alabama B K Expert Image Analysis LC, Potomac, Maryland J S Dana Farber Children s Hospital Cancer Center, Boston, Massachusetts M K Cincinnati Children s Hospital, Cincinnati, Ohio J P Children s National Medical Center, Washington, DC A K US Army Medical Research and Material Command, Fort Detrick, Maryland W S Children s Hospital of Alabama, Birmingham, Alabama A R
Neuro Oncol 16:707-18. 2014..The activity of tipifarnib, which blocks RAS signaling by inhibiting its farnesylation, was tested in children and young adults with NF1 and progressive PNs...
- Stressful life events and their relationship to psychological and medical functioning in children and adolescents with HIV infectionDeborah K Elliott-DeSorbo
Neuropsychology Group, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD, USA
J Acquir Immune Defic Syndr 52:364-70. 2009..To assess the relationship between number and type of stressful life events (SLEs) and psychological and medical functioning in HIV-infected children...
- Phase I trial and pharmacokinetic study of sorafenib in children with neurofibromatosis type I and plexiform neurofibromasAerang Kim
Pediatric Oncology Branch, NCI, CCR, Bethesda, Maryland, USA
Pediatr Blood Cancer 60:396-401. 2013..Monitoring long-term toxicities such as effects on growth and obtaining additional pharmacokinetic data were of importance due to the young age and long duration of therapy seen in previous phase I trials in children with NF1...
- Functional outcome measures for NF1-associated optic pathway glioma clinical trialsMichael J Fisher
From the Division of Oncology M J F, Neuroradiology Section, Department of Radiology L T B, and Neuro Ophthalmology Service G T L, The Children s Hospital of Philadelphia Department of Pediatrics M J F and Departments of Neurology and Ophthalmology G T L, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia Departments of Neurology, Ophthalmology, and Pediatrics R A A, Gilbert Family Neurofibromatosis Institute, Children s National Medical Center, Washington, DC Departments of Pediatrics and Neurology J C A, NYU Cancer Institute, NYU Langone Medical Center, New York, NY Children s Hospital at Westmead Clinical School S L A H, The University of Sydney, Australia Department of Neurology S L A H, The Children s Hospital at Westmead, Sydney, Australia University of Pennsylvania School of Medicine L T B, Philadelphia Department of Neurology R E F, Guy s and St Thomas NHS Foundation Trust and Institute of Psychiatry, King s College London Department of Neurology D H G, Washington University School of Medicine, St Louis, MO Department of Pediatrics R L, Feinberg School of Medicine, Northwestern University Ann and Robert H Lurie Children s Hospital of Chicago R L Pediatric Oncology Branch S M, National Cancer Institute, National Institutes of Health, Bethesda, MD and Department of Neurology N J U, Boston Children s Hospital, Harvard Medical School, Boston, MA
Neurology 81:S15-24. 2013....
- Virologic response using directly observed therapy in adolescents with HIV: an adherence toolJulia Bilodeau Purdy
National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA
J Assoc Nurses AIDS Care 19:158-65. 2008..A period of clinic-monitored DOT may allow diagnosis of nonadherence, discussion of medication barriers, and avoidance of unnecessary medication changes...