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4.-Mulberg_Kakkis-Dr.. - EveryLife Foundation for Rare Diseases
4.-Mulberg_Kakkis-Dr.. - EveryLife Foundation for Rare Diseases

... Rare Diseases: The Facts • Many pediatric disorders are rare diseases • Rare diseases, also referred to as orphan diseases, are defined in the United States (US) by the Orphan Drug Act (ODA) as diseases or conditions that affect fewer than 200,000 persons in the US. • There are an estimated 7,000 d ...
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...  Adverse events NIH & FDA require DSMB ...
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BLIND A condition imposed on an individual (or group of individuals
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Clinical trial

Clinical trials are experiments done in clinical research. Such prospective biomedical or behavioral research studies on human participants are designed to answer specific questions about biomedical or behavioral interventions, including new treatments (such as novel vaccines, drugs, dietary choices, dietary supplements, and medical devices) and known interventions that warrant further study and comparison. Clinical trials generate data on safety and efficacy. They are conducted only after they have received health authority/ethics committee approval in the country where approval of the therapy is sought. These authorities are responsible for vetting the risk/benefit ratio of the trial - their approval does not mean that the therapy is 'safe' or effective, only that the trial may be conducted.Depending on product type and development stage, investigators initially enroll volunteers and/or patients into small pilot studies, and subsequently conduct progressively larger scale comparative studies. Clinical trials can vary in size and cost, and they can involve a single research center or multiple centers, in one country or in multiple countries. Clinical study design aims to ensure the scientific validity and reproducibility of the results.Trials can be quite costly, depending on a number of factors. The sponsor may be a governmental organization or a pharmaceutical, biotechnology or medical device company. Certain functions necessary to the trial, such as monitoring and lab work, may be managed by an outsourced partner, such as a contract research organization or a central laboratory.Only 10% of all drugs started in human clinical trials become an approved drug.
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