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The effectiveness of a phenylalanine-restricted diet to improve the outcome of individuals with phenylalanine hydroxylase deficiency (OMIM no. 261600) has been recognized since the first patients were treated 60 years ago. However, the treatment regime is complex, costly, and often difficult to maintain for the long term. Improvements and refinements in the(More)
BACKGROUND In Tanzania, less than a third of HIV infected children estimated to be in need of antiretroviral therapy (ART) are receiving it. In this setting where other infections and malnutrition mimic signs and symptoms of AIDS, early diagnosis of HIV among HIV-exposed infants without specialized virologic testing can be a complex process. We aimed to(More)
OBJECTIVES Increasing evidence suggests that deficits in mindfulness (awareness, attentiveness, and acceptance of the present moment) play a role in a range of disorders involving behavioral dysregulation. This paper adds to that literature by describing a transdiagnostic psychotherapy (Mindfulness & Modification Therapy; MMT) developed to target behavioral(More)
Provision of health care to patients during and after events like those which occurred in association with hurricanes Katrina and Rita poses particular difficulties for rare disease patients, including those with genetic/metabolic diseases. In this summary, we recount the obstacles encountered in attempting to maintain and restore essential medical care to(More)
BACKGROUND The aim of our study was to develop and validate the first set of PKU-specific Health-related Quality of Life (HRQoL) questionnaires that: 1) were developed for patients with PKU and their parents, 2) cover the physical, emotional, and social impacts of PKU and its treatment on patients' lives, 3) are age specific (Child PKU-QOL, Adolescent(More)
Although theorists have posited that suicidal individuals are more likely than non-suicidal individuals to experience cognitive distortions, little empirical work has examined whether those who recently attempted suicide are more likely to engage in cognitive distortions than those who have not recently attempted suicide. In the present study, 111(More)
BACKGROUND The strict and demanding dietary treatment and mild cognitive abnormalities seen in PKU treated from a young age can be expected to affect the health-related quality of life (HRQoL) of patients and their families. Our aim was to describe the HRQoL of patients with PKU from a large international study, using generic HRQoL measures and an(More)
Sapropterin dihydrochloride is used to lower blood phenylalanine levels in tetrahydrobiopterin-responsive phenylketonuria in conjunction with a phenylalanine-restricted diet. This study investigated the solubility and stability of sapropterin tablets and a sapropterin powder formulation when mixed in selected beverages and foods. Solubility was partial for(More)
  • Lynn Nonnemaker, Sarah Thomas, Katharine Bothner, Amy Cunningham, Elizabeth Docteur, Ann Greiner +4 others
  • 2009
AARP's Public Policy Institute informs and stimulates public debate on the issues we face as we age. Through research, analysis and dialogue with the nation's leading experts, PPI promotes development of sound, creative policies to address our common need for economic security, health care, and quality of life. The views expressed herein are for(More)