Diggs L W
South Med J. 1980 Feb;73(2):188-91. doi: 10.1097/00007611-198002000-00019.
Regional sickle cell organizations are needed to assemble, catalogue, and distribute information, to maintain teaching programs, to serve as referral agencies, and to aid individuals with sickle cell hemoglobinopathies in obtaining maximal benefit from existing community services. The governing body should be representative of the entire area. More than half of the voting members should be adults with the sickle cell trait or sickle cell disease and/or their relatives. A suggested minimal staff could consist of a secretary-librarian and a director. The usefulness of the "Center" to patients, especially at the time of their recurrent painful episodes, could be greatly extended by the maintenance of a 24-hour telephone answering service. Funding of the "Regional Sickle Cell Information Center" by the United Way is recommended.
需要成立区域性镰状细胞组织来收集、编目和分发信息,维持教学项目,充当转诊机构,并帮助患有镰状细胞血红蛋白病的个体从现有的社区服务中获得最大益处。管理机构应代表整个地区。超过半数的投票成员应为具有镰状细胞性状或镰状细胞病的成年人及/或其亲属。建议最少配备一名秘书兼图书管理员和一名主任。通过维持24小时电话接听服务,“中心”对患者的用处,尤其是在他们反复出现疼痛发作时,可得到极大扩展。建议由联合之路为“区域镰状细胞信息中心”提供资金。