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    Cryopyrin-associated periodic syndromes: otolaryngologic and audiologic manifestations.
    News, published 2 months ago

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    Cryopyrin-associated periodic syndromes (CAPS) represent a spectrum of CIAS1 gene-mediated autoinflammatory diseases characterized by recurrent systemic inflammation. The clinical spectrum of CAPS varies from mild to severe and includes the syndromes historically described as familial cold autoinflammatory syndrome (FCAS), Muckle-Wells syndrome (MWS), and neonatal-onset multisystem inflammatory disease (NOMID). This article presents the largest cohort of patients with CAPS. The objective is to describe the pathogenesis, otolaryngologic, and audiologic manifestations of CAPS.

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    Drug halts organ damage in inflammatory genetic disorder
    News, published 3 months ago

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    NIH study shows benefits of long-term Kineret therapy in people with NOMID

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    Cuts in Ireland drastically impacting young man with CINCA's future
    News, published 8 months ago

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    Aisling McNiffe's voice crackles when she talks about her son's school prospects. Jack, a chirpy, fair-haired six-year old with a fondness for Toy Story movies, is the only person in the world known to have both Down's Syndrome and CINCA Syndrome, a degenerative disease that causes crippling headaches, severe arthritis, skin rashes, deafness and blindness.

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    Clinical Outcomes and Safety: A Registry Study of Ilaris (Canakinumab) Patients
    News, published 10 months ago

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    The purpose of this observational study is to collect additional information regarding long-term safety and effectiveness of Ilaris in the treatment of CAPS patients in clinical practice.

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    Anakinra to Treat Patients With Neonatal Onset Multisystem Inflammatory Disease
    News, published 12 months ago

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    This study will evaluate the safety and effectiveness of anakinra (Kineret(Registered Trademark)) for treating patients with neonatal onset multisystem inflammatory disease (NOMID), also known as chronic infantile neurological, cutaneous and arthropathy (CINCA) syndrome.

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    From the Australian Prescriber: New drugs Canukinumab
    News, published about 1 year ago

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    Canakinumab

    Some of the views expressed in the following notes on newly approved products should be regarded as tentative, as there may have been limited published data and little experience in Australia of their safety or efficacy. However, the Editorial Executive Committee believes that comments made in good faith at an early stage may still be of value. As a result of fuller experience, initial comments may need to be modified. The Committee is prepared to do this. Before new drugs are prescribed, the Committee believes it is important that full information is obtained either from the manufacturer's approved product information, a drug information centre or some other appropriate source.

    (Aust Prescr 2011;34:55-9)

    Ilaris (Novartis)
    vials containing 150 mg lyophilised powder for reconstitution
    Approved indication: cryopyrin-associated periodic syndromes
    Australian Medicines Handbook section 15.2.2

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    Más calidad de vida con biológicos en niños con patologías autoinflamatorias
    News, published about 1 year ago

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    En el segundo gran grupo, el del síndrome de la fiebre persistente, no mantienen estos episodios tan marcados. Aquí se ubica el síndrome de CAPS o criopirinopatías. Las criopirinas son las proteínas que ponen en marcha el mecanismo inflamatorio.

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    “Studies of the Natural History, Pathogenesis, and Outcome of Autoinflammatory Diseases (NOMID/CAPS, DIRA, CRMO, Still's Disease, Behcet's Disease, and Other Undifferentiated Autoinflammatory Diseases)”
    News, published about 1 year ago

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    Overall Status: Recruiting

    This study will examine and test patients with neonatal onset multi-system inflammatory disease (NOMID) to learn more about the cause and course of the disease. It will study the disease signs and symptoms and the possible role of a gene called CIAS1, and it will develop a database to gather information on patients with NOMID in the United States and around the world. It will also serve as a screening protocol to offer eligible patients participation in a treatment protocol, if an appropriate one is available.

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    NOMID in the news in Canada
    News, published about 1 year ago

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    Such is the case for seven-year-old Brampton resident Michael Spiridakis, who suffers from neonatal onset multisystem inflammatory disease (NOMID), a genetic disorder that causes uncontrolled inflammation in multiple parts of the body.

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    Wood River teen pushes recognition of rare diseases
    News, published about 1 year ago

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    Radney, 16, has a particular interest in the subject of rare diseases because almost four years ago she discovered she has Neonatal Onset Multisystem Inflammatory Disease, also called NOMID.....

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