Recording the GSD world
Some fascinating insights into our statistics are starting to appear as we have been working to improve our database and ensure compliance with the EU General Data Protection Regulation (GDPR).
Phase of improvement
With the continuing development of policies and systems within AGSD-UK our database of contacts has been undergoing a refresh and improvement. The main content is of course people affected by GSD and their families and recording membership. But our database also has many other categories including medical professionals, the pharmaceutical industry, funders, other support groups and the media. It is an essential resource for keeping everyone in touch with our activities and the GSD world.
Wide range of uses
As well as being used for the essential contact information, it is also used for email distribution, mailing Glisten magazine, generating the maps of patients for the website and helping patients and families make contact with each other where both parties wish to do so.
Identity and contact details are of course confidential, but we can share the statistics. We now have a report which gives an overview of members and other contacts, both in the UK and overseas, with breakdowns by GSD, gender, age bands, country, etc.
The numbers are not of course complete for GSD in the UK, as we do not have contact with everybody who is diagnosed, let alone those who are still struggling for a diagnosis. However, it does give some interesting insights.