The Patrick Wild Centre, which sits within the University of Edinburgh’s College of Medicine & Veterinary Medicine, is a world-leader in biomedical and translational research. The ambition of the Patrick Wild Centre is to understand the neurological basis of and to test new therapies for autism spectrum disorders (ASD), fragile X syndrome (FXS) and intellectual disabilities.


To support the Patrick Wild Centre deliver their strategic objectives, a website is required for individuals with fragile x syndrome or family members to register an online profile. The website will provide the Patrick Wild Centre with a registry of people with fragile x syndrome, and their families. 

The website will be public facing, and feature a User account registration, and login facility.

For registered Users, it will provide the following features:

  • Standard account management facilities
  • Add family members (optionally with linked accounts), and define relationships
  • Record personal and medical profile details, including fragile x status
  • Targeted survey delivery to family members

The website will have an admin area, restricted to authorised staff from Centre for Clinical Brain Sciences. This section will feature:

  • User profile view/ management 
  • Survey creation and delivery configuration
  • Reporting for collected survey data

The website will use the same look and feel as the Patrick Wild Centre website.

The ongoing maintenance of the website will be managed by Production Management. An OLA agreement will be created as part of this project so on-going support can be managed effectively.

Out of scope: The ability for registered users to generate their own family tree in the site is out of scope. However, if the project timelines and deliverables allow, there is a chance this additional feature could be delivered. 


Objectives / deliverables

The objectives and deliverables align to the MoSCoW scale. The MoSCoW scale categorises the priority of deliverables. The deliverables will have one of the following categories: must, should or won't. 


Development responsibilities and sign off:

  • LTW - create, refine and test wireframes and all aspects of the UI 
  • Apps Development - create, refine and test business logic and security and all other aspects of development 


The project will be conducted in the agile framework. Sign off of all development work will be conducted by the business during the reviews sessions after each iteration. These meetings will also inform which user stories should be developed in the next iteration. 


Ref Objectives / deliverables  Owner Priority

Define the design features and functionality of the website 

D1 Document user personas  Project Manager/ IS Apps Development Must
D2 Document user stories, including condition statements IS Apps Development / Project Manager Must
D3 Create prioritised backlog, release plan, Bamboo and Jira configuration  IS Apps Development  Must
O2 Ensure appropriate compliance with GDPR and information security guidelines     
D4 Document a Data Protection Impact Assessment (DPIA) for the website  Project Sponsor  Must
D5 Ensure all the information security requirements in the DPIA comply with the IG framework(s) outlined by the relevant governing body - InfoSec, Guardian Caldicott etc.  Project Sponsor Must
O3 Establish the website     
D6 Set up Python Django environments  Development Technology  Must
D7 Work will be managed as multiple iterative sprints aligned to project scope and covering cycles of development, testing and code release IS Apps Development/ LTW  Must
D8 Develop and test all aspects of the UI and front-end of the website  LTW  Must
D9 Develop and test all aspects of the backend of the website IS Apps Development  Must
D10 Review and QA the development output from each iteration, confirm the user story priorities for the next iteration  Project team Must
D11 Sign off user acceptance testing Project Sponsor Must
O4 Confirm readiness for Production Management to begin maintenance support / deploy    Must
D12 Produce Operational Line Agreement (OLA) showing how Production Management will support the website following deployment  Production Management/ Project Manager Must
D13 Sign off OLA Project Sponsor  Must
D14 Confirm readiness to begin maintenance support of the new website with the relevant check list Production Management  Must
D15 Promote development to live environment  IS Apps Development Must
O5 Closure       
D16 Lessons learned session Project team Should
D17 Closure report Project Manager Must



  • The website will provide the Patrick Wild Centre with a registry of people with fragile x syndrome, and their families. 
  • To develop a better understanding of the natural history of fragile X syndrome in affected males and females, and of the clinical presentation and course of premutation carriers
  • To establish a database of well-characterised individuals with fragile X syndrome and premutation carriers, which will allow researchers to examine the relationship between biological factors and clinical manifestation
  • To provide a focus for an improved follow-up service for patients with fragile X syndrome, maintaining better contact with the family and providing information for the family
  • To identify a register of individuals who would be available to take part in other research studies concerning fragile X syndrome and conditions related to the premutation.


Success Criteria

Project Success

  • The fragile x website is successfully implemented
  • The fragile x website is accessible and user-friendly for those who wish to participate in the registry
  • The fragile x website gradually becomes a registry of individuals with fragile x syndrome, including the family relationship between individual accounts 
  • The Patrick Wild Centre are able to effectively manage the registry and extract relevant reporting 


Project Milestones

Plan End of plan 16-Aug-2019 Yes


Execute End of foundations 29-Aug-2019 No


Deliver End of development iterations 10-Oct-2019 No


Deliver Go live 11-Oct-2019 No


Deliver End of maintenance iteration 14-Oct-2019 No


Close Lessons learned 15-Oct-2019 No


Close Closure report 18-Oct-2019 No








Project Info

Fragile X Registry website
MVM Research (MVMRES)
Management Office
Project Manager
Kevin Hone
Project Sponsor
Sonya Campbell
Current Stage
Project Classification
Start Date
Planning Date
Delivery Date
Close Date
Overall Priority