How Does It Work?
- The clinical information of patients who have consented to take part in the registry will be entered into the secure INPDR registry website.
- This information will be entered by the patient's clinician or their clinical team, and will be updated on an annual basis.
- 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.
How Do I Join?
Once your clinician has discussed this with you, they will then be able to enrol you, or the person you care for, onto the registry. Using medical information stored by the clinician, they will start adding data to the registry. Your involvement will help us produce a clearer picture of Niemann-Pick Diseases by helping clinicians fill the gaps in their information.
Participating in the registry requires no extra testing or lifestyle changes. With your consent, your clinical team will be in charge of inputting into the registry and maintaining the data. You are not obliged to take part in the registry, and your quality of care will not be at all affected if you do not take part. Participating in the registry is 100% voluntary.