PROMs  (Patient Reported Outcome Measures)

This page provides the details of the PROMs that we license and the processes for securing the appropriate license.

Transform MS CIC is the lead organisation for coordinating the licensing of numerous PROMs that its team has been involved in developing. Many of these have been adopted globally by leading pharmaceutical companies with some appearing in the FDAs compendium of clinical outcome assessments.    

Income generated from license fees that are retained  by Transform MS are used to meet our stated social purpose  - this means the monies are either invested back in to research that advances the field of Measurement Science or in clinical services or research and innovation that supports people with Multiple Sclerosis.  

Therefore, as well as using high quality PROMs well regarded by regulatory and clinical groups, our partners can be sure they are also supporting these important areas.

Which PROMs do we license?

Through our group you can license the following PROMs.

  • Multiple Sclerosis Impact Scale (MSIS-29)

  • Multiple Sclerosis Walking Scale (MSWS-12)

  • Multiple Sclerosis Spasticity Scale (MSSS-88)

  • Cervical Dystonia Impact Profile (CDIP-58)

  • Parkinson Disease Dyskinesia Scale (PDYS-26)

Other PROMs in development

We are also developing the following PROMs which could be licensed in the near future:

  • Upper Limb Function in Multiple Sclerosis (ULF-MS)

  • Walking Scale for Stroke

Use the Contact Us page to enquire about these developing PROMs.

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Translations

As part of the licensing terms we provide requested copies of translations of the PROMs that we hold; we do not charge for this. For some of our more regularly utilised PROMs we hold translations for up to 75 countries/languages. For our most regularly licensed PROMs (MSIS-29 and MSWS-12) we have provided details of the countries and languages that we hold translations for.

Click on this link to check available PROMs translations

As part of the quotation process, we will ask you to confirm the translations required and can provide copies in advance of the license if required for ethical approval.

 
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Formats

Licenses are most commonly provided for use of the PROMs in a paper format. However, increasingly we are asked to also cover use in a digital format. We do not have a digital format that we insist upon partners using and responsibility rests with the licensee to ensure its validity and accuracy. The Transform MS team are able, as part of our analysis services, to offer analysis that can statistically investigate validity of results.

We understand that with COVID the anticipated delivery of studies has had to be flexible; with increased digital and remote monitoring use. We have consciously decided to be flexible with these changes and adjust the use of the PROMs without increasing any licensing charges.

Quotations, Prices and Licensing

Licenses are required to use all of our PROMs.  For projects that involve commercial companies we make a charge.  This is calculated using some broad factors which determine the complexity of the clinical trial/project.  We are committed to being consistent in pricing across all of the partners who license our PROMs.

In order to obtain a fee quotation for licensing our PROMs please complete the form below.  If you are requesting a license for a PROM that is not being used in a clinical trial please do summarise as much information as you can, referencing points below such as number of users/uses and geographical use.   

Please note that we do consider grouping the licensing of various PROMs.  This could include one or more scale being licensed in the same study or multiple studies being covered under the same license.  There is also potential to consider a company-wide license of our PROMs.  Working in this way can help reduce administration costs and we aim to reflect that in our pricing.

PROMs License Enquiry Form

 

We aim to provide a quotation within 24 hours but commit to this being less than 3 working days.