The INPDR is a ground-breaking initiative looking to lead the way for rare disease patient registries. Clinicians are key to the creation and growth of the INPDR.

You can find support with the approval process and technical help here, plus there are a variety to keep up to date and get in touch with the team.

A User Manual should have been provided with your Welcome Pack, which shows you how to Register, Sign In and Input Data. In addition, there are support mechanisms within the Registry platform, which provide explanations for various data sets and some How To Guides.

Initially, there is a Quick Guide for Clinicians with tips about logging in, enrolling a new patient, entering data and managing data.

You can also find support in our Frequently Asked Questions, which we continually update and develop based on the enquiries we get.

We attend a variety of global events and conferences where we are available for advice or to respond to queries on the R&D process, patient recruitment or using the Registry.

We can also provide additional training and support either over the phone, by email or arranged visits from our Recruitment Specialist.

Alternatively, if you are unable to find an answer to your query you can email or contact a member of the team.