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International Niemann-Pick Disease Registry

International Niemann-Pick disease Registry

International Niemann-Pick disease Registry

The INPDR is a disease-specific global registry, a subsidiary of the International Niemann-Pick disease Alliance (INPDA) with an independent Board of Trustees and Management Team, and support from professional partners involved in the care of patients affected by all types of Niemann-Pick disease (ASMD and NPC).

The INPDR is a collaboration between clinicians, scientists, researchers and patient associations across the world to collect clinical, genetic, diagnostic and outcome data from patients with Niemann-Pick diseases (NPD) and share data to support research that improves progress, care and treatment for Niemann-Pick disease patients and their families.

How does it work?

The Registry collects both Patient Reported Data (PRD) and Clinician Reported Data (CRD).

Patient reported data can be input through an online self-enrolment process and by a patient or caregiver.

The clinical data of patients who have consented to take part in the Registry will be entered into the secure INPDR registry website by the patient’s clinician or their clinical team, and will be updated at the time of each follow up appointment.

As the Registry develops and more information is entered, researchers and scientists will be able to use the data, and we expect research into NPD to increase.

More research ultimately means better outcomes for patients.

Why is the INPDR needed?

The INPDR is a unifying force that has the power to increase knowledge and understanding of Niemann-Pick diseases (NPD) through the collection of much-needed patient data on a global scale.

By enabling appropriate access to anonymized data, the INPDR will encourage efficient and timely diagnosis, improve understanding of disease progression and influence patient care, whilst supporting global research efforts.

The active participation of patients from around the world will provide robust data on this rare disease, facilitating the development and recruitment of future clinical studies and supporting access to new and emerging therapies.

How can I join?

Participating in the INPDR, by sharing your data, is one of the most important things you can do to influence progress in research and care for Niemann-Pick disease patients now and in the future.

Getting involved and joining the INPDR is easy:

  1. You can speak to your clinician about consenting to provide clinical data, or
  2. You can sign up to Patient Reported Data (PRD) though the website: www.inpdr.org

You can take part in either the PRD or CRD but your data will be much more powerful if you consent to both.

There is also a range of information on the website, as well as PRD tutorial videos to help you.

Will my data be kept safe?

The safety and security of your data is our number one priority.

The data held on the Registry is anonymous and will not contain any personal identifiable information such as names or addresses.

The clinical team who look after you will be able to identify your data by linking this to a unique subject number which will be given when you enrol onto the Registry. Access to the registry will be restricted to approved individuals who have made an application to be a part of the registry, and approval will only be given after the application is reviewed by the the INDPR scientific advisory board.”

Who owns the INPDR?

The INPDR is a global registry and a not-for-profit, registered company, based in the UK.

The initiative encourages global collaboration between patient groups, clinicians, scientists and researchers, all of whom wish to improve care and treatment options for NPD patients everywhere.

Please visit the website www.inpdr.org or follow us on Facebook, Twitter or LinkedIn.

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