FOI_25-136 Ehlars-Danlos Syndrome research papers
Date of response: 02 June 2025
We have now considered your request of 03 May 2025 for the following information:
Question 1. Please provide copies of all guidance, research papers, internal memos, documents, reports, correspondence, meeting minutes, or any other materials held by the university that reference or relate to Ehlers-Danlos Syndrome (EDS).
This request includes, but is not limited to:
Research and Evidence:
• Any research papers, project summaries, or evaluations of studies involving EDS.
• Details of research funded by the university that involve or mention EDS, including funding calls, awarded grants, and outcomes.
Policy and Strategy:
• Any policy documents, strategic reports, planning documents that address or mention EDS, either directly or as part of a broader rare diseases or connective tissue disorder strategy.
Clinical and Public Guidance:
• Any clinical guidelines, best practice protocols, or patient care guidance relating to the diagnosis, treatment, or management of EDS.
• Training materials or guidance provided to NHS or social care professionals regarding EDS.
Stakeholder Engagement:
• Minutes or notes from meetings, advisory groups, or public consultations where EDS was discussed.
Clarification received: 03 May 2025:
Please include from January 2000 to the present day.
Our response:
We regret that on this occasion it is not possible to provide the requested information for any materials held by the University that reference or relate to Ehlers-Danlos Syndrome.
We have determined that the cost of finding and assembling the requested information will exceed the ‘appropriate limit’ as defined by section 12 of the Act and the Freedom of Information and Data Protection (Appropriate Limit and Fees) Regulations 2004/3244.
'The ‘appropriate limit’ of £450, which equates to 18 hours’ work, as defined by the Information Commissioner’s Office, can relate to one request in its entirety or to a series of linked requests. If the University cannot locate, retrieve and extract some or all of the requested information within the 18 hours we are not obliged to retrieve any of the requested information.
Information relating to your request, may be held by one or all three university departments: namely Postgraduate Research (PGR), Research and Innovation Services (RIN), and our Faculty of Medicine and Health Science - Norwich Medical School (MED). There is no central record of where this information is held.
As of the date of your request, for records potentially held by MED, there is no way to identify if the information you requested is held, and if it is, where that information might be held, . Any of the document formats you have described could be held by academics, researchers, tutors or any other member of staff and there is no central record of where all of our research papers, policies, documents, meeting notes etc are held.
To explain our position, for MED alone we would need to liaise with all staff to check all documents currently held, which could fall into the scope of your request, and we would also need to search all internal storage locations. This would produce a significant amount of data which could fall into scope of your request. We have estimated it would take over the 18 hours to request all data held by those individuals and to then undertake a review of all documentation to extract the information you seek. This exceeds the appropriate time-limit as outlined above.
To assist you in formulating a request to which we can respond, we would be able to provide research papers held by our Research and Innovation Services and Postgraduate Research divisions. We have consulted with those university departments, and In line with your rights under section 1(1)(a) of the Act to be informed whether information is held, we confirm that these departments do not hold any recorded information for any guidance, research papers, internal memos, documents, reports, correspondence meeting notes, or any other materials held by the University that reference or relate to Ehlers-Danlos Syndrome.
We are sorry we cannot provide the data you requested, but trust this response explains our position.