Building the patient community
| Autor: | O Timmis, Flóra Raffai |
|---|---|
| Rok vydání: | 2017 |
| Předmět: |
0301 basic medicine
Gene transfer Disease 030105 genetics & heredity Bioinformatics Community Networks 03 medical and health sciences 0302 clinical medicine Resource (project management) Rare Diseases Research Support as Topic Genetics Medicine Humans Molecular Biology business.industry fungi food and beverages Public relations Clinical trial Research strategies Molecular Medicine Patient Participation business Societies 030217 neurology & neurosurgery |
| Zdroj: | Gene therapy. 24(9) |
| ISSN: | 1476-5462 |
| Popis: | There are many challenges in conducting rare disease research. The conditions are often poorly understood, small patient populations are dispersed around the world, and there are limited funding opportunities. Patient groups can serve as a key partner in overcoming these challenges, as they understand the impact of rare conditions on patients' lives. This gives patient groups valuable scientific insights into the disease. This can be used to create research strategies, address research bottlenecks and directly fund research that appropriately addresses patient needs. Patient groups can also play a critical role in recruiting and retaining patients for clinical trials, which reduces time and resource waste. By partnering with patient groups, research teams can improve efficiency of research and best meet the needs of patients. Researchers can also play an important role in building and supporting patient groups to unlock these benefits. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
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