New Registry Partnerships
The primary goal of NISR is to facilitate the collection, storage, and responsible sharing of patient-centered data related to skin diseases and conditions. Through its network of partners, NISR provides a platform for health care organizations and researchers to access quality data for research and education.
Patient registries are databases that collect information about patients with a particular condition or disease. This information can include medical history, treatments, and outcomes. The data collected in patient registries can be used to better understand the condition, identify trends, and develop new treatments. Patient registries can also be used to track the progress of a particular treatment or to compare different treatments. By collecting data from a large number of patients, researchers can gain a better understanding of the condition and its effects on patients. This data can then be used to develop new treatments and improve existing ones.
We would like to partner with individuals and organisations who are driven to launch new dermatology registries.
Please download our application forms for further guidance.
Questions?
We have a network of organisations and individuals working with us who can help you.
Application Forms
Why partner with NISR?
The challenges to developing registries are substantial, however NISR has developed core competencies and technologies that can assist and support the establishment of a disease specific registry. NISR can assist with Governance, Ethical Approval, Patient Consent, Patient information booklets, GDPR and preparation of data protection impact assessments, technology platform and operations.
In order to ensure the privacy and security of patient data, NISR has implemented a number of data protection measures, including the use of industry best practices, encryption, and access control. Data collected by NISR is also subject to strict governance protocols, which ensure that only authorized personnel can access and use the data. NISR also plays a role in helping to raise awareness of skin diseases and conditions and to promote research in this field. The registry provides an easy–to–use platform for researchers to access data, which can be used to answer questions about skin diseases and conditions. This data can then be used to develop new treatments and therapies for skin diseases and conditions
Applications
NISR is open to receiving requests for assistance from groups based in Ireland interested in developing a patient registry about any dermatological disease. These requests must be accompanied by a short proposal that demonstrates an understanding of the aims and objectives of the registry. NISR will consider each application and engage with the applicants on how NISR can assist.
Please review our application forms and contact us with any preliminary questions you may have.
We are not currently accepting applications for new registries outside of Ireland but if you have an existing registry in another country and you would like to discuss a collaboration please get in touch.
Our registries collect information that is routinely recorded when you visit your doctor. They are defined as observational studies, so there is no treatment or procedures involved that you would not be receiving as per your usual treatment.
These kinds of data collected include your diagnosis, genetics, weights, heights and other kinds of demographic data, test results, health complications, medicines and treatments, hospitalisations, healthcare services use and information about how the condition and treatments have an impact on you. Your quality of life is generally collected by a patient survey.
Patients are recruited by consultants and their teams at hospitals around Ireland and Internationally.
This can happen in one of the following ways:
- At a clinic visit if diagnosed with the condition of interest to the registry the patient and/or parent/guardian will be asked whether they would be willing to participate in the study. A Patient Information Sheet and instructions on how to proceed if they are interested in taking part or finding out more about the study will be given to the patient and/or parent/guardian. Age appropriate information is also provided if the participant is a child. Where the patient and/or parent/legal guardian feel that they have had adequate time to consider, enough information regarding the study and are happy to proceed, then consent can be sought.
- Over an online video conference or phone call if the individual is unable to visit the study site but has expressed an interest in enrolling in the study. In this case, over video conference or call the registry will be explained by the Principal Investigator. The consent/assent forms and information booklets will have been posted out to the individual in advance of the call, at their request. The individuals postal address and email address will be recorded in the study centers patient file and not on the NISR Solutions CLG registry. Consent will be collected via online video conference or phone call but all of the registry data will be collected in person at clinic visit.
Informed consent is a process initiated prior to an individual agreeing to participate in a study and continues throughout the individual’s participation.
Informed consent is essential for all patients participating in the study. In obtaining and documenting informed consent, the investigators comply with applicable regulatory requirements, adhere to Good Clinical Practice (GCP) and to the ethical principles that have their origin in the Declaration of Helsinki.
All NISR Solutions CLG registries comply with the General Data Protection Regulation (GDPR) (2018) and the Data Protection Act 2018 in processing participant data. These regulations safeguard individuals fundamental right to data privacy.
Password protection and encryption of computer files and data, training of staff in data protection and regular review of data protection procedures are some of the ways we protect your or child’s information.
The GDPR is all about the protection of personal data. The definition of personal data in Chapter 1 Article 4 is any information relating to an identified or identifiable natural person (data subject); an identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as name, identification number, location data, on line identifier or one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person.
All NISR Solutions 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.
While the data is being collected your doctor and their team will know your name. Then user specific permissions only allows access to specific predefined data, so other users of the registry do not see your name or identifying data.
A Scientific Research Committee, made up from disease conditions specific medical care teams, is responsible for the release and use of any data from a registry. They screen and decide if the registry data will be released for research. If they approve the research then NISR Solutions CLG package the data for use.
Names, addresses and other information that could be used to identify participants are kept strictly confidential and are not available to those analysing the data.
All data is stored and processed in a Tier 3 data centre that comply with ISO27001 security accreditation.
All data from the primary server is copied to the secondary server every night. Daily full backups are maintained for 14 days. Weekly full backups are maintained for 8 weeks. Monthly full backups are maintained for 12 months. Backups are tested regularly to check the quality of restoration. All backups are protected from unauthorised access, theft and tampering with IP address restriction, restricted user access and password authentication.