Under the patronage of the Minister of Health, Dr. Firas Al-Hawari, the Ministry of Health launched an electronic national registry for cystic fibrosis patients in cooperation with the Health Services Quality Enhancement Project funded by the United States Agency for International Development and implemented by the Health Informatics Company (Hakeem).

Al-Hawari explained during the launch ceremony that the establishment of the registry aims to create a nucleus for institutionalizing the development and computerization of genetic and rare disease records, and other disease records at the national level, to form a comprehensive database that provides healthcare providers, researchers and decision-makers with data that contributes to directing preventive and therapeutic programs for patients, including estimating the burden of the disease, and for this database to contribute to unifying healthcare paths between various health institutions, and improving their quality based on the latest scientific evidence.

Al-Hawari said, "About two years ago, the Ministry of Health began to overcome difficulties and obstacles facing cystic fibrosis patients in Jordan, believing that proper treatment and follow-up may alleviate symptoms, reduce complications, prolong the average lifespan of the patient and improve his or her quality of life, despite the lack of a cure for cystic fibrosis to date."

He added, "The Ministry has provided lung function testing devices to measure lung functions, as they are basic requirements that help in diagnosis and monitoring the course of the disease, the extent of its impact on the lung, and in measuring the extent of benefit from treatment."

He pointed out that the Ministry has trained technical cadres to use these advanced devices, which are suitable for children's ages to conduct the necessary tests to determine lung functions and read their results, in cooperation with the Health Services Quality Enhancement Project, and has developed treatment protocols by a national technical team, so that the service provided to all patients is at the same level in all treatment centers.

The Ministry has also operated lung function laboratories in its hospitals in the north, center and south of the Kingdom, which in turn supported the treatment centers established by the Ministry in a number of these hospitals.

Al-Hawari appreciated the efforts of the Health Services Quality Enhancement Project, the United States Agency for International Development, and the Health Informatics Company, which support the Ministry of Health in caring for cystic fibrosis patients. He also thanked the members of the national committees who prepared the first national report on these patients in Jordan for the year 2022, based on an analysis of the data collected by them.

In turn, the CEO of the Electronic Health Company, Eng. Omar Ibrahim Ayesh, expressed his pride that the Electronic Health Company is part of the achievement of the National Electronic Registry Project for Cystic Fibrosis in Jordan. Ayesh added, "Developing the electronic platform required great efforts, expertise and perseverance from the company's work team, as this project extends beyond the direct benefits to patients, hoping that it will be the nucleus of a comprehensive set of national health records that include various chronic diseases that affect the health of Jordanians.

The head of the pediatrics department at the Ministry of Health, Dr. Basem Al-Zoubi, presented a summary of the first national report on cystic fibrosis patients in Jordan for the year 2022, in which he indicated that the number of patients who were identified amounted to 385 cystic fibrosis patients, including 136 patients in the capital, Amman, and 100 patients in Irbid Governorate, while the remaining patients were distributed across the governorates of the Kingdom.

He pointed out that 56% of these patients were males and 44% were females, and the average diagnosis of these cases was 3 years old.

The launch ceremony was attended by the Secretary-General of the Ministry of Health for Administrative and Technical Affairs, Dr. Ilham Khreisat, Brigadier General Dr. Hussein Al-Khrisha, the representative of the Director-General of the Royal Medical Services, and Chairman of the Board of Directors of the Health Informatics Company, Rami Faraj, Acting Director of the Health and Population Office at the United States Agency for International Development John McKay, and the Director of the Health Services Quality Enhancement Project, Dr. Essam Adwy.​​​