International Niemann-Pick Disease Registry
What is the INPDR?
The INPDR is a disease-specific registry owned and managed by the International Niemann-Pick Disease Alliance (INPDA) with 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).
How does it work?
The registry collects both patient reported data and clinical data. Patient reported data can be input 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 do 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 – simply follow the link below.
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 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 enroll 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 not for profit, registered company based in the UK. It is a subsidiary of the INDPA (inpda.org) and has an independent Board of Directors. 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.
Further information is available at inpdr.org.