National and International Skin Registry Solutions CLG (NISR) 

The role of NISR is to collect and protect the data of consenting patients with specific dermatological conditions.

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. 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 standardized 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 be contacted about participation in clinical trials or assess epidemiology of patients.

Our registry participants deserve the best data management, governance and clinical expertise managing their data. With all of the related process held to the highest ethical, legal, scientific and clinical standards. 

These are the principles NISR is structured on. 

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