Genetic Testing for Rare Diseases: A Systematic Review of Ethical Aspects.

Genetic testing is associated with many ethical challenges on the individual, organizational and macro level of health care systems. The provision of genetic testing for rare diseases in particular requires a full understanding of the complexity and multiplicity of related ethical aspects. This systematic review presents a detailed overview of ethical aspects relevant to genetic testing for rare diseases as discussed in the literature.

Lived Experience of Hereditary Chronic Pancreatitis - A Qualitative Interview Study.

Objectives: Hereditary chronic pancreatitis is a rare condition characterized by intermittent acute episodes of pancreatitis and long-term impairment of pancreatic functions. However, the subjective perspective of individuals affected by hereditary chronic pancreatitis has been little studied. This qualitative study investigates the experience of hereditary chronic pancreatitis patients and their relatives because the awareness of the needs of those affected is an essential component of a patient-centered management of chronic conditions.

Perceptions of genetic testing in patients with hereditary chronic pancreatitis and their families: a qualitative triangulation.

Hereditary chronic pancreatitis (HCP) is a genetically determined condition characterized by intermittent acute episodes of pancreatitis and long-term impairment of the exocrine and endocrine pancreatic functions. Genetic test results can have substantial psychological and social consequences for the individuals tested and their families. Nevertheless, little is known so far about the subjective experience of individuals genetically tested for HCP.

A phase II study of alemtuzumab, fludarabine, cyclophosphamide, and doxorubicin (Campath-FCD) in peripheral T-cell lymphomas.

The clinical course of peripheral T-cell lymphoma (PTCL) is usually aggressive and the prognosis unfavorable. Therefore, there is a need for improvement of treatment options. Patients with newly diagnosed (n = 27) or refractory/relapsed (n = 11) PTCL received a combination of alemtuzumab, fludarabine, cyclophosphamide, and doxorubicin.