National Sleep Disorders Registry

Sleep medicine is a rapidly growing specialty in the field of medicine that became an essential specialty service in any clinical or academic institute. Over the past 25 years this field has expanded and developed in order to diagnose and treat the increasing numbers of different sleep-related disorders. Many physicians think that sleep disorders means obstructive sleep apnea only, however, the International Classification of Sleep Disorders (ICSD-2005) included more than 84 disorders. As a result, the number of clinical sleep facilities needed to diagnose and treat patients with sleep disorders has increased worldwide. Once diagnosed, many of these disorders can be treated with good results.
Although under-recognized, sleep disorders are prevalent. Recent data suggest that up to 25% of middle age males and 9% of middle age females have obstructive sleep apnea (OSA). Recently, we reported that more than one third of middle aged Saudi males are at a risk of having obstructive sleep apnea and need further work up to rule in or out this disorder. Additionally, OSA seems to prevalent among Saudi women due to the high prevalence of obesity among this group. OSA is one of 87 disorders. This may give an idea about the prevalence of sleep disorders in the community. Despite the apparently high prevalence of sleep disorders, a new national survey found that sleep medicine service is underdeveloped in Saudi Arabia compared to developed countries. The number of beds allocated for sleep medicine in KSA was 0.06 beds/100,000, compared to 0.3-1.5 beds/100,000 citizens in developed countries. Additionally, it seems that cultural factors affect sleep regularity and sleep pattern in Saudis. Saudi elementary school children have been reported to have the shortest sleep duration in the published literature. Reduced sleep duration in students impact negatively on their school performance. Sleep disorders like sleep apnea results in serious complications related to excessive daytime sleepiness like car accidents and decreased productivity and serious medical conditions like hypertension, ischemic heart disease, pulmonary hypertension, cardiac arrhythmias, stroke and sudden death. Furthermore, rare hereditary sleep disorders could be more common among Saudis due possibly to high rate of inter-marriages. We recently reported the HLA typing of a family (6 affected members) with a rare disorder called Kleine-Levin Syndrome (KLS). In addition to that, we have another 6 young patients with the same disorder. KLS is a sleep disorder characterized by periodic hypersomnia and other behavioral disorders where the affected patient may sleep for a period up to three weeks and returns to normal state between attacks. We may appreciate the high number of Saudi patients with this disorder, if we know that only 3 cases have reported in a country like Canada. Collecting these cases may help us to describe the gene of these rare disorders, which will reflect on patients’ care and the reputation of research in KSA.
Based on the above it becomes evident that the time has come to have a national registry for sleep disorders in order to have a better and clear understanding of different types of sleep disorders in Saudi Arabia and help health care authority in planning the institution of new facilities to look after those patients. 
Goals of the Registry:
  • To collect data and accumulate experience related to the most common sleep disorders seen in the kingdom
  • To identify various complications related to sleep disorders
  • To link with other registries to compare the frequency of some sleep disorders
  • To serve as a source for identifying patients rare diseases for clinical investigations
  • To facilitate clinical research by providing data
  • To serve as a source for multi-center investigations and as an internal database for individual research projects
  • To help to do genetic and other basic studies
  • To help to study the natural history of various sleep disorders, follow up and organize prospective clinical studies
  • To evaluate current clinical practices
  • To identify opportunities to improve the quality of care for patients with sleep disorders
  • To help develop diagnosis and therapeutic national guidelines
  • To provide real life information for health care planners in the Kingdom regarding this problem by estimation of the burden of various disorders and future needs and costs.

 Please contact us for more information about National Sleep Disorders Registry project…