13 research outputs found

    Apotheker moet extra alert zijn. Bij thuisgebruik van oncolytica.

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    Online one-stop shop for disaster response services after the MH17 airplane crash: an evaluation study.

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    Background A one-stop shop for disaster response services provides a central location for information and advice in an accessible way. Yet little is known about its organization and outcomes. After the MH17 airplane crash, the one-stop shop concept was realized through a digital environment called the Information and Referral Center (IRC). The aim of this study was to evaluate the experiences of users and providers in regard to the IRC and to identify improvement points for future IRCs. Method Data was collected among affected ones as well as involved organizations, using interviews, focus groups, surveys and online user information. Existing evaluation and quality models were combined to design the study and analyze the data. Results First, affected ones and a variety of organizations involved were positive about the merits of the IRC. Affected ones indicated they perceived the IRC as a reliable source of information and appreciated the referral possibilities. Second, the feature of the IRC to serve as a community where affected ones could meet, share experiences and support each other was hardly used according to participants. Lastly, tracking evolving psychosocial needs and problems through the IRC was hampered due to difficulty in accessing relevant data. Conclusions The IRC helped organizations to structure and align their services. Affected ones were positive about its reliability and accessibility. An IRC has to be embedded within the established care structures. Future research could indicate whether an IRC is useful in other event types and population contexts as well

    [Ventricular assist device implantation as a bridge to cardiac transplantation in two adolescents with end-stage cardiomyopathy and heart failure as a result of anthracycline use]

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    Contains fulltext : 69207.pdf (publisher's version ) (Closed access)In a adolescent women aged 15 and 17 years respectively, severe heart failure developed within a few months of anthracycline chemotherapy given for osteosarcoma. In the guidelines of the European Society of Cardiology, malignancy with a remission duration of less than 5 years is an absolute contraindication to cardiac transplantation. Neither patient was eligible to receive a ventricular assist device (VAD) as a bridge to cardiac transplantation in the Netherlands, but they were accepted in Germany. One patient received a cardiac transplant 13 months later and at the last follow-up check she was in good health with a remission of 3 years. The other patient developed bone metastases 6 months after the VAD implantation. Cardiac transplantation was not a treatment option for her. Dose-dependent cardiotoxicity is a serious complication of the use of anthracyclines. In severe heart failure the prognosis is often worse than in adjuvantly treated malignancies like osteosarcoma. VAD may therefore be a valid option for patients with severe heart failure after anthracycline use for a malignancy. In cases of sustained remission VAD may be the bridge to transplantation

    Experimental treatment of NRAS-mutated neurocutaneous melanocytosis with MEK162, a MEK-inhibitor

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    Contains fulltext : 137997.pdf (publisher's version ) (Open Access)Neurocutaneous melanosis (NCM) is a rare congenital disorder characterized by the association of large and/or multiple congenital melanocytic nevi (CMN) of the skin with melanocytic lesions of the leptomeninges, including melanocytosis. Leptomeningeal melanocytosis carries a poor prognosis once neurological symptoms develop. Despite surgery, which is often not radical, few other treatment options exist. Recently, it was demonstrated that early embryonic, post-zygotic somatic mutations in the NRAS gene are implicated in the pathogenesis of NCM.In this report, we present a 13-year-old boy with NCM and progressive symptomatic leptomeningeal melanocytosis. A somatic NRASQ61K mutation was present in both CMN as well as the melanocytosis. Despite repeated surgery, the patient showed clinical progression. Therefore, treatment with MEK162, a MEK inhibitor, was started on compassionate use base. The patient died only five days later, i.e. too early to expect a clinical effect of MEK162 therapy. We therefore studied the effect of MEK162 at the protein level in the leptomeningeal tumor by immunohistochemical and Western Blot analyses using Ki67 and pERK antibodies. We observed lower MIB-1 expression and lower pERK expression in the post-treatment samples compared to pre-treatment, suggesting a potential effect of MEK inhibiting therapy. Further studies are needed to determine whether MEK inhibitors can effectively target NRAS-mutated symptomatic NCM, a rare but potentially fatal disease
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