Registry services
- In this section:
- Registry services
- Resources & Publications
- Press Releases
At INPDR, our priority is to support high-quality research that benefits the Niemann-Pick community.
We provide secure access to data and expertise through our registries, which bring together patient and clinical information to support a wide range of research activities. Our team can work with you to provide access to bespoke datasets and registry infrastructure to support your own research initiatives.
We aim to make our services as accessible as possible. Clinicians contributing to the registry and patient support organisations can access INPDR services without charge, provided the work is not supported by commercial partners. Academic and statutory organisations can request access for approved research projects through a single-use fee, while commercial organisations can access INPDR services through a subscription model.
Working with INPDR
If your research aims to improve understanding, care, or outcomes for people affected by Niemann-Pick diseases, we welcome the opportunity to support you.
We recommend that researchers engage with the INPDR team at an early stage to discuss their research priorities. These initial discussions enable us to better understand your objectives, provide guidance on the availability and suitability of registry data, and explore how our infrastructure can support your work. This collaborative approach helps to refine your study design, ensure feasibility, and maximise the potential impact of your research before progressing to the formal application process.
For further information or to discuss your project, you can get in touch with us at info@inpdr.org.
Accessing INPDR services
If the aim of your research is to help the Niemann-Pick community, our aim is to help you in every way we can.
- The first step is to complete a data access request form.
- Please make sure you have read our data access process and provide as much information as possible, including study time frames.
- Your completed form will be assessed by our management team followed by our Scientific Advisory Committee. We’ll then contact you with the outcome of your request.
- If you want to use data from the registry for creating a publication (such as an article or a poster), read our INPDR Publication Policy then get in touch to request a publication project form.