NISR collect and analyze data in order to better understand peoples health conditions, general well being and the treatments they receive.
All our registries are secure web-accessible electronic platforms that support highly secure data entry as well as reporting, sharing and anonymization of the registry dataset for the purposes of patient benefitting research.
The use of registry data by industry is supported by the EMA ( EMA Guideline on registry-based studies EMA/426390/2021 Released 22 October 2021) for gathering evidence in the pre and post authorisation phase of the evaluation of the efficacy and safety of medications.
Data Sharing Mission Statement:
The role of NISR is to collect and protect patient data. We do not own any of this data, but act as stewards for the patients who wish for their experiences to be studied. We will never sell patient data. We act as an interface between the patients data and researchers who wish to learn from it. Permission to use the data is only given to researchers who have met all of our legal, ethical and safety criteria and show a clear research purpose and output strategy for the results.
We do not collect data to generate a profit for NISR, our Board do not receive any financial benefit from volunteering to work for NISR.
We serve our registry participants by providing a standardised structure that protects their data at an international level and a disease specific oversight to promote research focuses on what will most benefit patients.
We expect that we may by approached by companies to assist them in linking with patients who have given their informed consent to participate in clinical trials, to be contacted for surveys or asses epidemiology of patients.
If you work with a company that is interested in partnering with NISR to use registry data in a away that aligns with our mission statement please email firstname.lastname@example.org with a brief expression of interest and if it is suitable we will send you our application documents.
If you would like to find out more information on our general data application process, please visit our Researchers FAQ
We have a network of organisations and individuals working with us who can help you.