Results 1 to 7 of 7

Thread: World Wide Database

  1. #1

    World Wide Database

    Dr. Young,

    I have read posts where some researchers have a hard time finding SCIs for clinical trials. My sister is a DBA and could create a database accesible via the web. Do you think there would be an interest in something like this among the different research companies?

    Debbie

  2. #2
    Senior Member rdf's Avatar
    Join Date
    Jul 2001
    Location
    Someplace between Nowhere and Goodbye
    Posts
    12,961
    Hi debbie, I developed some ER diagrams a few months ago, as I planned to create a database for exactly the reason you state. I kind of put it in slumber mode due to lack of a significant number of ongoing/planned trials. But it's a good idea, it can be done, but I just didn't have the time right now to pursue what needs to be pursued, mainly the medical community.

  3. #3
    Debbie,

    There is now an attempt in several states to establish what is called a Spinal Cord Injury Registry. Congress recently even passed a law that mandated the creation of such a registry. In New Jersey, for example, we are setting this up as part of the state database of people who have had trauma-induced injuries.

    Let me try to find out more about the status of such efforts because the key is not having a database but how to make the database accessible to legitimate organizations. For example, you really don't want to have a list of people and their information for public consumption. People with illegitimate reasons for taking advantage of people with spinal cord injury will be downloading data from that database.

    Wise.

  4. #4
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Location
    Wisconsin USA
    Posts
    11,007
    The state of Virginia has a spinal cord injury registry for all SCIs in the state. I believe you can access it through the Medical College of Virginia in Richmond.

  5. #5

    Database

    RDF,

    Ithink I'll put together a proposal and see if there is any interest within the medical communities and drug companies. If I get any interest I'll get in touch with you.

    Debbie

  6. #6

    Database

    Dr. Young,

    That makes sense regarding personal info being kept private. There are safeguards that can be put in place where interested parties would have to contact a DBA before info would be made available. It would be great however to have one central database with all of the pertinent SCI data less any personal info until proper identification and motives can be established. I'll wait to hear from you before proceeding.

    Debbie

  7. #7
    Senior Member
    Join Date
    Aug 2001
    Location
    Cosne sur Loire
    Posts
    249
    Debbie,

    Further to a meeting in Paris last week, the WHO (World Health Organization) decided to create a worldwide database to support SCI, and the Council of Europe may take part of it. Initially, the adventure began with the Reykjavik Congress in Iceland where the pioneers researching a cure for SCI got together and discussed the topic. This Congress was sponsored by WHO and the Icelandic Health Authorities. The motto of the Congress was to discuss the best way of how the world can join hands and change attitudes towards a cure for SCI. Now WHO wants to go ahead by creating this database and I am mandated to direct the project. Obviously it takes time and money. The database is meant to be for researchers, professionals and SCI individuals or their family. I am open to any idea for this database and how to collect money from associations or private people. So please contact me at the following mail audursg@hotmail.com if you have any useful information (I am writing on Albert Bohbot's account because I am in France for my daughter's laserpuncture treatments).

    Audur Gudjonsdottir
    audursg@hotmail.com

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •