By Institute of Medicine, Board on Health Sciences Policy, Forum on Neuroscience and Nervous System Disorders, Bruce Altevogt, Lori Nadig, Sarah Hanson

Many voluntary overall healthiness enterprises fund translational learn. more and more those enterprises are taking a look at enterprise philanthropy as a serious approach to increase their missions of aiding sufferers and dealing to treatment affliction. a variety of members amassed on October three, 2008 on the Beckman middle of the nationwide Academies of technological know-how for a workshop titled "Venture Philanthropy recommendations utilized by sufferer companies to aid Translational Research." members with adventure in enterprise philanthropy shared their studies and classes discovered so as to increase potency and effectiveness in translational examine.

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This creates a leadership gap, where foundations need to step in and act as the focal point for the research, said Joyce. This is especially true of rare diseases, where the volume of work is relatively small, she added. Increasingly, voluntary health organizations are doing more than just writing checks by presenting research results at scientific meetings if they believe they have the scientific expertise and the broad, constant-attention view that the research needs. Becoming more involved and actively leading the scientific process is an important role for a voluntary health organization.

GETTING STARTED IN TRANSLATIONAL RESEARCH BOX 1-2 Key Points: Getting Started in Translational Research • • • • • • • • • • • • • • • A large part of the initiation phase is a thorough analysis of the state of the science and medicine. Do not rely on a single matrix for decision making; the process is unique to an organization in many ways. It is better to develop a process for coming to a decision. Understand your target diseases and conditions; this will help you in your decision making, prioritizing, and communications.

Other groups are working to create shared databases. Hesterlee discussed the Muscular Dystrophy Association’s TREATNMD patient registry. With a €10 million grant from the European Union, TREAT-NMD put together a massive database of registries from 20 countries in Europe that have agreed to file mandatory data items. The project brings together different stakeholders including patients, scientists, health care professionals, the private sector, and patient groups from many countries to collaborate and discuss what information is most important in the battle against muscular dystrophy.

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