Welcome to the world of Alstrom Syndrome! As you already know, Alstrom Syndrome is a very complex condition with multiple challenges for management and monitoring.
Unfortunately, because of the rarity of Alstrom, medical information is scarce and we are only beginning to bring together the knowledge for physicians, educators, and other specialists who work with children and adults with Alstrom Syndrome. Since the identification of the gene causing Alstrom Syndrome (ALMS1) in 2002, there is now more interest and an increasing body of information.
If you are interested in more detailed information, see the summary of current research, medical literature available, and diagnostic criteria.
Important Urgent information
For patients with Alström Syndrome admitted to the hospital or outpatient facilities, even if for routine minor surgery, it is vitally important that medical and nursing staff is aware that hypoxia (low blood oxygen levels) can occur very rapidly in patients with Alström Syndrome. In some patients, this has lead to life threatening heart/lung problems because of the reduced reserve capacity of the cardio respiratory system. Please use all precautions for monitoring oxygen saturation.
- PATIENT REGISTRY If you have a patient with Alstrom Syndrome and would like to participate in research, in collaboration with The Jackson Laboratory, we maintain an ongoing registry and database of patients in more than 50 different countries. We are always eager to obtain clinical information about any patient with Alstrom Syndrome. If you wish to contribute to this effort, please see the documents below for participation in Alstrom Syndrome research at The Jackson Laboratory:
- CLINICAL DATA FORM- Alstrom syndrome patients
- 2013-14_HS00-007-consent- Jackson Laboratory Research Study