Australian Twin Registry

Client Background

 
The Australian Twin Registry (ATR) is a non-profit organisation committed to facilitating and supporting medical and scientific studies that involve the participation of twins and or their relatives. The ATR itself does not directly conduct any medical or scientific research but rather enables researchers to recruit participants for their respective studies.
 
The company achieves this by maintaining a registry of twins in Australia that have volunteered to have their details recorded in the database or to be contacted for participation in medical studies. Containing data on over 31,000 pairs of twins, it the largest volunteer registry of its kind in the world.
 
Requests are made from researchers to use the registry to recruit participants. Before these requests are sent out to twins in the registry they are reviewed to ensure the proposed actions of the researchers satisfy ethical guidelines and are of significant value to the area of proposed research.  A small fee is paid by the researchers so that ATR can recover some administration costs.

Current System

 
The ATR currently has a large central database (registry) that stores all of its information on participants in addition to study requests that have been made by researchers. Because of privacy issues we are not preview to the contents or structure of most of the central database. This is not detrimental to our project, however, since we are creating our own database from ground up using a subset of the data in the ATR's database. What is important to our project is the subset of data that we are to work with. The structure of this data is as follows:  

Researcher Table

Unique Record Identifier

Title

Given Name

Surname

Job title

Department

Institution

Study Table

Unique Record Identifier

Study Indentification Number

ApplicationYear

ParentStudyID

ResearcherID

ContactPersonID

StudyName

EstimatedCompletionYear

CoInvestigators

rAKA_Title

CurrentStatus

Study Criteria Set

CriteriaSetID

StudyID

CriteriaSet

CriteriaDescription

Adult_Junior

Target

SetType

Zygosity

Study Measures

StudyID

MedicalTestID

MeasureName

Study Status

StudyStatusID

StudyStatus

SortOrder

Figure 1: Subset of the table structure of the Australian Twins Directory that we are concerned with.

Currently the ATR maintain an online presence through Twins.org.au. To a degree the ATR staff maintain the website themselves through the content management system in place, but as there are still limitations on what they can do, Josh Martin is required from time to time to help them resolve certain issues. Their hosting setup is of particular interest to us. We have been told that their current server is only capable of hosting PHP pages. We have also been informed that they currently use MySQL as a backend to their database through which they store content for their website.
 
Both of these systems within the ATR are currently separate and are maintained as such. This is a result of the sensitivity of the information stored in the ATR database which currently resides in a secure University Of Melbourne server.