Facilitating Research

The INPDR is ground-breaking in bringing together the Niemann-Pick diseases community to enable data to be used for cutting edge trials and potentially pioneering research that improves the lives of people with Niemann-Pick diseases.

Access to researchers, Clinicians and the Patient community

Researchers from verified institutions may apply for access to anonymised data or analysis from the INPDR for the benefit of the Niemann-Pick diseases community.

You may request INPDR data by completing a Data Application Request Form. Please make sure you have read our Data Request Process and provide as much information as possible, including study time frames. You can read our principles for data release for therapy comparison studies, here.

When we receive your completed form, our management team will assess feasibility. Feasible studies will then be reviewed by the Scientific Advisory Committee and the Registry Management Team. You will be contacted using the details you provide on your form with the outcome of your request.

If you would like to use data from the Registry for the purpose of creating a publication (such as an article or a poster), you will need to read the INPDR Publication Policy then get in touch to request a Publication Project form.

Academic and statutory organisations can request access to datasets and analytical services for approved research with a single-use charge applied on a case-by-case basis.

Exceptions & Special Cases

• Clinicians can access data from their own clinical site without need for approval from the INPDR Board or without Scientific Advisory Committee review.
• There will be no charge for access to INPDR services to support research by INPDR participating clinicians or patient organisations provided that commercial organisations or not involved in the research.

Commerical Organisations

Commercial organisations will have access to a three-tiered level of subscription model. The subscription model is designed to support the clinical research needs of industry and corporate stakeholders whilst enabling fair access for patients and academic researchers.

The Subscription Model’s three-tiered level of service is available to commercial organisations and subscription fees will be provided to potential subscribers on request.

Subscription Model Tiers

Subscribers will receive an extensive service to support routine data sharing for activities such as post-marketing monitoring support and long-term longitudinal studies. Additionally Premier Plus includes up to three applications for routine data each year, access to INPDR's statistical services (including the production of aggregate outputs, descriptive analyses, as well as multivariate modelling studies) and a copy of the annual data quality report.  Representation on the Stakeholder Working Group is also included. The subscription fee will reflect specific data needs and sharing arrangements, plus duration (multi-year contract will apply)which will be contractually agreed on an individual basis.

Premier subscribers can present up to two data requests each year, draw on up to 100 hours of analytical services and benefit from clinical research support. Premier subscribers will have a representation on the Stakeholder Working Group and will receive a copy of the annual data quality report. The subscription fee will reflect the detail and duration of this service (multi-year contract will apply), which will be contractually agreed on an individual basis.

Advanced subscribers can submit one data request per year, can draw up to 50 hours of statistic services (including aggregate outputs, descriptive analyses and multivariate modeling studies) and benefit from clinical research support. Advanced subscribers will also have representation on the Stakeholder Working Group and will receive a copy of the annual data quality report. The service will involve a multi-year contract.

Essential will be available to non-subscribing academic and government organisations only and through this, users may apply for data or analytical services from the registry. Charges will be applied to cover both the administrative and research costs for delivering these services.

Patient advocacy organisations will also be able to access INPDR services at no cost.

Subscription Model Graphic

Client Request TypeCost Available ServicesAssessment of Applications
Researcher/ non-participating clinician Costed on a case-by-case basis using a cost recovery model 1. Controlled access to datasets
2. Statistical services and aggregate data
Full review
Participating clinician Single clinical siteNo cost1. Controlled access to datasets
2. Statistical services and aggregate data
No feasibility assessments required
International Dataset No cost1. Controlled access to datasets
2. Statistical services and aggregate data
Full review
Advocacy organisations
Patient groups
Media organisations
No costStatistical services and aggregate data only Full review
Commercial organisations (Product Developers/ CROs) Based on a subscription to INPDR services 1. Controlled access to datasets
2. Statistical services and aggregate data
Full review