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Clinical Trials and Research Information (Links)

What is a Clinical Trail?

Clinical trials are research investigations in which people volunteer to test new treatments. Interventions or tests as a means to prevent, detect, treat or manage various diseases or medical conditions. Some investigations look at how people respond to a new intervention and what side affects might occur. This helps to determine if a new intervention works, if its safe and if it is better than the interventions that are already available. You can find further information on Australian Clinical Trails at- https://www.australianclinicaltrials.gov.au

Unfortunately we have no up to date research here in Australia! The last research for A/Cs was undertaken by Professor Geoffrey Klug and Professor Rosenfeld that research took place in the eighties and nineties.

This research isn’t available for download however can be obtained at the RMIT Library in Melbourne. If you joined the library you can access these articles by emailing access info@deconuniversityrmitlibraryhttp://info@deconuniversityrmitlibrary An excerpt can be found on researchgate.net

Some research papers are-

Middle Fossa Arachnoid Cysts in Association with Subdrural Haematomas for management.

Article Feb: 1990  By Myron A Rogers, Geoffrey L Klug and Kevin H Siu.

Cerebrospinal fluid Shunt Infections in Children.

Article Oct 1995. By Anne Roan, Geoffrey Klug, Geoffrey Hogg.

We have been writing and advocating to find a research facility to have more up to date research done but to date we have had no success.

It is important that our stories are heard so we can receive further research and studies here in Australia. By contributing your story on this site it demonstrates the need for much more education, awareness and research into our condition! So far we have recorded over three hundred patients and we have more each day needing support. Our pediatric patients and families are in need of the most help. Please consider if you are one of these patients we urge you to tell your story!

Overseas there is so much more research into Arachnoid Cysts, Dr Micheal Levy is head of neurosurgery at Radys Children’s Hospital San Diego. Pub Med shows all his publications, He has preformed surgery on many patients and pediatrics. He apparently travels to other countries training surgeons on Arachnoid Cysts. There is also Dr Kristopher Kale in America Doing genetic studies on Arachnoid Cyst Patients. He is at Yale School Of Medicine. Knut Wester has also been active in Studies on Arachnoid Cysts, he is internationally recognized and edited two most up to date books at the university of Bergen, Norway, Bergen, Haukeland University Hospital, Bergen Norway. We have a link to these books in Patient resources and publications. Both these books prove we are needing treatment and ongoing care.

Rare Disease/ Arachnoid Cysts

http://rarediseases.org/rare-diseases/arachnoid-cysts/

 

One of the most recent studies on Arachnoid Cysts is –

Management of Arachnoid Cysts: A Comprehensive review. This is a open access article you can download from Cureus.

http://10.7759/cureus.2458

published Oct: 2018- It gives an excellent picture where it is explored, the best approach according to each major type of Arachnoid Cyst: middle cranial fossa cyst, suprasellar cyst, intrahemispheric cyst and quadrigeminal cyst.

 

Intracranial Arachnoid Cysts: impairment of higher cognitive functions and postoperative improvement 

http://www.jneurodevdisorders.com/content/5/1/21

 

Another Research Paper on Spinal Arachnoid Cysts in Adults is from https;//thejns.org In this site you will also find some interesting books on Neurosurgery of the Spine, Pediatric neurosurgery and some other interesting books on Neurosurgery. Type in Spinal Arachnoid Cysts in the search bar – right hand corner to find various articles.

Spinal Arachnoid Cysts in Adults: diagnosis and management. A single – center experience. View Article – P711

 

Pubmed-I can hear my shunt -audible noises associated with CFS shunts in hydrocephalic patients.http://10.1007/s00701-3179z

 

Further Studies will be added.