RESEARCH and grants
2021 & 2022
We are pleased to inform you that Spinal Cerebrospinal Fluid (CSF) Leak of Canada (“Spinal CSF Leak Canada”) has funded a research grant (Sum total of $8,000) related to the inception of a Spontaneous Intracranial Hypotension Registry, implemented by Dr. Farnaz Amoozegar and the staff at the Calgary Headache Assessment and Management Program (CHAMP) in Calgary, AB. This Grant is made to advance and improve the Spontaneous Intracranial Hypotension Registry (the “CSF Registry”).
Study Title: Spontaneous Intracranial Hypotension Registry(SIH registry).
Principal Investigator
Farnaz Amoozegar MD MSc FRCPC, Clinical Associate Professor, Department of Clinical Neurosciences, Cumming School of Medicine, University of Calgary & Hotchkiss Brain Institute
This Grant is to assist you with your goal to develop a registry that contains data collected from adult patients diagnosed with SIH. The purpose of the SIH registry is to improve our understanding of the:
Epidemiology
Diagnosis
Clinical characteristics
Most useful imagining modalities
Treatments and management
Prognosis, and
Natural history of SIH
Registries are commonly used for the purpose of collecting large amounts of data with the intent of using this data to learn about a particular disease or condition.
Spinal CSF Leak Canada trusts that this CSF Registry will be a useful resource to allow researchers to answer many questions about SIH and to gain an in-depth understanding of the natural history of the disease. In particular, the data collected in the registry would allow researchers to better understand the risk factors associated with recurrence of SIH and determine the best treatment options for patients suffering with this condition. We hope the information from the CSF Registry will lead to guidelines for the diagnosis and management of this condition, which are currently not available in Canada.
Spinal CSF Leak Canada supports Dr. Amoozegar’s ultimate goal to better care for patients with SIH and cost savings for the healthcare system by having a better understanding of what tests are appropriate and which treatments are likely to be most successful.
Spinal CSF Leak Canada wishes to extend its gratitude to Dr. Farnaz Amoozegar and her team at CHAMP for their efforts and contribution in advancing research relating to the treatment of SIH.
The SIH registry was made possible by generous funding from the Spinal CSF Leak Canada organization and the University of Calgary Clinical Research Fund Grant. This initiative marks a significant step forward in advancing research and improving our understanding of SIH.
Learn more about the SIH registry at the University of Calgary
2022
Spinal CSF Leak Canada has funded a research grant related to (the “CSF Registry”), to Dr. Hoydonckx and her team at the University Health Network (UHN) in Toronto, ON. This Grant is made to advance and improve the Spontaneous Intracranial Hypotension Registry (the “CSF Registry”) implemented by Dr. Farnaz Amoozegar and ther team at CHAMP .
Spinal CSF Leak Canada wishes to extend its gratitude to Dr. Hoydonckx and her team at UHN for their efforts and contribution in advancing research relating to the treatment of SIH.
2023
Study Title: Patient experience of diagnosis and treatment of spontaneous intracranial hypotension in Canada: A cross-sectional online survey
Principal Investigator
Yasmine Hoydonckx MD MSc FIPP, Assistant Professor, Department of Anesthesia, Toronto Western Hospital, UHN.
Co-Investigators
Farnaz Amoozegar MD MSc FRCPC, Philip Peng MD MBBS PRCPC, Aparna Saripella MSc, and Spinal CSF Leak Canada, a national health charity.
This study will try to identify the challenges patients face in receiving care for suspected or confirmed spontaneous intracranial hypotension (SIH) in Canada. This information will play an important role in improving patient access and care in the future.
To this date, there is a lack of data of the impact of SIH on Canadian patients and the potential barriers to their access to care. This survey is the first study that seeks to investigate this issue. We hope that it will also assist in the development of a national clinical guideline, which currently does not exist in Canada.
Patients must meet the following:
Be 18 years or older
Be a Canadian citizen/permanent resident and living in Canada while suffering from position-related headaches (CSF leak symptoms).
Your participation would involve:
Completing an anonymous online survey, lasting approximately 10 minutes.
Thank you for taking the time to share your perspectives. We truly appreciate your participation particularly during these challenging times.