Clinicians

The Clinician Reported Database (CRD) is one of the two core components of the International Niemann-Pick Disease Registry (INPDR), working alongside the Patient Reported Database (PRD).​

While the PRD captures the lived experiences of patients and families, the CRD collects detailed clinical information provided by healthcare professionals. Together, these two datasets create a more complete and meaningful understanding of Niemann-Pick diseases.​

Supporting clinicians to contribute​

We aim to make participation in the CRD as straightforward and supported as possible. The INPDR team works closely with clinical sites throughout the process—from initial onboarding through to ongoing data entry and use.​

We provide:​

• Study documentation, including protocol and consent materials​
• Support with site set-up and onboarding​
• Guidance on data entry and registry use​
• Ongoing support from our Clinical Research team, including data review and queries​

Our approach is collaborative, recognising the time and expertise required to contribute high-quality clinical data.​

How data is collected and used​

Once a site is established and appropriate approvals are in place, clinicians (or designated members of the clinical team) can enter data securely into the CRD.​

This includes:​

• Diagnostic information and medical history​
• Clinical assessments and disease progression​
• Treatments and management approaches​
• Follow-up data over time​

Data is collected at baseline and updated during routine clinical visits, allowing the registry to build a longitudinal picture of each patient’s journey. All data is reviewed to ensure quality, consistency, and appropriate use within the registry.​

Supporting Investigator Initiated Research​

Registry investigators are encouraged to undertake their own research using registry data, with INPDR providing a platform to support both local, national and global research initiatives. INPDR offers support across the research process, including feasibility assessments, access to high-quality curated datasets, methodological guidance, and opportunities for international collaboration and collaborative co-authorship. By enabling investigators to explore clinically relevant research questions using real-world data, INPDR aims to facilitate meaningful insights that advance understanding, inform clinical practice, and ultimately improve outcomes for patients and families affected by Niemann-Pick disease.​

Linking with the Patient Reported Database (PRD)​

A key strength of the INPDR is the ability to link clinical data from the CRD with patient-reported information from the PRD.​

Where patients are enrolled in both databases, their data can be connected (using a unique identifier), allowing clinical insights to be combined with lived experience. This creates a more holistic understanding of the disease—linking what is observed in clinical settings with what patients experience in their daily lives.​

You can encourage your patients to join the Patient Reported Database to support this integrated approach. Together, these complementary data sources strengthen research, improve understanding, and enhance the overall value of the registry.​

Working with INPDR​

If you are interested in contributing to the CRD, our team will guide you through the process and support you at each stage.​

To find out more or begin the onboarding process, please contact: info@inpdr.org​