2024

Thanks to the generosity of our donors, we have been able to provide funding for a study led by Dr. Farnaz Amoozegar, neurologist and Clinical Associate Professor at the University of Calgary, member of the Medical Advisory Team, and Chair of our Scientific Committee.

Study Title: SIH Outcomes study: “Prospective Observational Study“

The SIH outcomes study is a prospective longitudinal observational study that aims to assess outcomes for SIH patients treated by various interventions, including percutaneous procedures (epidural blood patching/fibrin glue), surgical interventions, and endovascular treatments. The study is done in a prospective manner through both data collection by a physician and via patient reported outcomes (PROs). The PROs are questionnaires that assess a number of factors including disability, quality of life, mental health, and a global assessment of change, all collected prospectively at multiple time intervals from prior to treatment to five years following treatment. This is a multicenter study involving both US and Canadian sites.

In order to assess disability, a specific Spinal CSF Leak Disability Scale has been created with the hope of becoming a validated scale in time for this condition.

2021 & 2023

We are pleased to inform you that Spinal Cerebrospinal Fluid (CSF) Leak of Canada (“Spinal CSF Leak Canada”) has assisted in funding a research grant related to the inception of a Spontaneous Intracranial Hypotension Registry (the “SIH Registry”), established by Dr. Farnaz Amoozegar and the staff at the Calgary Headache Assessment and Management Program (CHAMP) in Calgary, AB.

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 SIH 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 SIH 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

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.

The survey is now closed

2022

Spinal CSF Leak Canada has funded a research grant related to the Spontaneous Intracranial Hypotension Registry (the “SIH Registry”), to Dr. Hoydonckx and her team at the University Health Network (UHN) in Toronto, ON. This Grant is made to advance the SIH Registry established by Dr. Farnaz Amoozegar and her 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.