Lowe Syndrome Clinical Database

Online Clinical Databases are World Wide Web based secure applications to share knowledge and experience via the Internet. Clinical data should be able to be placed into the database directly from the PC’s of authorised¬† participating doctors or carers and accessed from anywhere around the globe. allowing multiple users to simultaneously access the same data.

This paper is intended to help specify the requirements and to invite proposals for a clinical database as an application or a hosted service so we can decide on the best practise and likely funding or any other resources needed to support it. The Lowe Syndrome Trust UK and other lowe syndrome organisations worldwide such as the LSA USA, ASL France and AISLO Italy (there also also organisations in Japan and others) want to establish and to be able to share an online clinical database. As the syndrome is rare, it is thought unlikely that the database will contain more than 5000 cases. It is also thought that the “database” would be relatively unstructured data with text, pictures and videos searchable by any web search tool. See the front page of the Winter/Spring 2007 LSA newsletter. This is to help families, parents, carers and doctors provide a better understanding and treatment for Lowe Syndrome and for medical research. There is also increasing recognition of the potential value of clinical databases in four main areas:

  1. Audit, to assess the quality of care provided in terms of its effectiveness, equity and efficiency.
  2. Individual patient care, by providing accurate data on the possibilities of different outcomes, which are needed to inform patients.
  3. Planning services.
  4. Evaluative research, to establish the clinical effectiveness and cost-effectiveness of interventions and services.

An example of the sort of data likely to be required is at: The Lowe Patient Registration Form

An example of a clinical database application can be seen at http://www.globalmednet.com/home/database.htm.

The database would be registered with organisations such as DoCDat (maintained and developed by staff at the London School of Hygiene & Tropical Medicine UK) so that it would be easily found by doctors.