The DMD Hub ToolKit

We can provide a detailed report for industry including the number of patients who may be potentially eligible for a particular study in the UK based on the information collected on the CRD and specific trial inclusion/exclusion criteria. The report will include aggregate data and can be used by companies for feasibility assessment and by clinical trial sites to support defining accurate realistic recruitment targets. The report will be delivered within 4 weeks. Please contact dmdhub@newcastle.ac.uk if you are planning a DMD clinical trial in the UK and are interested in this service.

You are able to view the data items that we collect in the DMD Hub Central Recruitment Database here.

Click here to download a copy of the CRD Request Form.

The DMD Hub Clinical Trial Finder is an online repository of information on all ongoing and upcoming UK trials in DMD, presented in an accessible format for patients, families and clinicians who are not directly involved in the delivery of clinical trials. It includes up-to-date information on the clinical trial, main eligibility criteria, when and where trial sites are active and recruiting, and key contact details.

We are able to advertise clinical trials on the DMD Hub clinical trial finder and notify the patient community through our mailing lists.

Please provide the information needed to update the DMD Hub clinical trial finder, by downloading the form on this link. Please send the completed form to dmdhub@newcastle.ac.uk.

Read more below:

It is well-understood that receiving the best care can dramatically improve the quality of life and life expectancy of individuals with Duchenne muscular dystrophy, enabling them to lead fulfilling, independent lives into adulthood. The importance of international care recommendations cannot be underestimated.

These recommendations are currently being reviewed by the DMD Care UK project, to ensure that all patients with DMD have access to the best care. 

At this time of national emergency, we are here to support both clinicians and patients in whatever ways we can. 

In this section, you will find a series of webpages and downloads to provide you with the most up-to-date information on the virus, from guidelines on clinical trials and action plans, to advice for patients with DMD. 

TREAT-NMD is a network for the neuromuscular field that provides an infrastructure to ensure that the most promising new therapies reach patients as quickly as possible. Since its launch in January 2007 the network's focus has been on the development of tools that industry, clinicians and scientists need to bring novel therapeutic approaches through preclinical development and into the clinic, and on establishing best-practice care for neuromuscular patients worldwide.

Guidance documents for becoming audit ready. 

 

Tools to help with consenting in clinical trials.

 

The DMD Hub has created this costing guidelines template to help industry and trial sites determine fair and uniform costing throughout all clinical trial sites in the UK. 

Use these tools to help with muscle biopsy collection and processing. 

 

These tools cover the use of MRI in DMD clinical trials. 

Use these tools for support completing ethics and Integrated Research Application System (IRAS) forms. 

Publications relating to DMD clinical trials. 

In collaboration with Duchenne UK, the DMD Hub has been working on a series of webinars to address some of the key issues around clinical trials in the UK, including what happens when a trial ends, and everything patients need to know about gene therapy. 

More videos can be found on the Duchenne UK YouTube page: Duchenne UK - YouTube

 

Tools to help train staff to run DMD clinical trials.