Iranian Primary Immunodeficiency Diseases Registry (IPIDR)

The Iranian Primary Immunodeficiency Diseases Registry (IPIDR) was first implemented as a research project at TUMS by Dr. Aghamohammadi and Dr. Moein, in 1999, with collaboration from a number of researchers and faculty members, including Dr. Farhoudi, Dr. Movahedi, dr. Pourpak and Dr. Gharagozloo. Six years later, the registry came under the umbrella of IAARI, where it has enjoyed invaluable cooperations from other academic institutions such as the Medical Universities of Iran, Shahid Beheshti, Mashhad, Shiraz, Isfahan, Babol, Kerman and Zanjan, resulting in multiple scientific awards, achievements and publications at prestigious domestic and international journals and congresses.

The IPIDR currently operates under the supervision of Dr. Fazlollahi and the Primary Immunodeficiency Diseases Planning Council, where patient files are constantly being reviewed in accordance with the latest International Union of Immunological Societies (IUSI) diagnostic criteria.

 

Mission

To provide a registration system to collect and store primary immunodeficiency patients’ clinical, laboratory and epidemiological information in order to:

  1. Create a robust database for basic and applied research in the field of PID.
  2. Create knowledge and innovation in the fields of immunology and PID.
  3. Provide a data driven knowledge-based service to improve health and the quality of life of PID patients and their family members.

Goals

  1. To provide access to the patients’ clinical and biological data.
  2. To conduct basic and applied research in order to determine the prevalence, pathogenesis and risk factors threatening PID patients.
  3. Scientific cooperation with domestic and international research and educational organizations in compliance with applicable laws and regulations.
  4. To identify diagnostic, therapeutic and preventive measures to tackle PIDs.
  5. To promote research-based health at the societal level.
  6. To provide access to novel prenatal diagnostic tests.
  7. To promote quality of life, earlier diagnosis and more effective treatments by means of educating patients, families and healthcare professionals.
  8. To provide specialized premarital, prenatal and postnatal counseling with emphasis on earlier diagnosis and prevention.
  9. To provide consultations before and after bone marrow transplantation.
  10. To inspire and motivate researchers interested in the field of immunodeficiencies.