The purpose of this registry is to collect detailed information on the characteristics, treatment, and outcomes of patients with a subarachnoid hemorrhage. This information will enable research aimed at improving the safety and effectiveness of current and future treatments. By studying these data, the investigators aim to identify which treatment strategies offer the best results and which factors are most important in the care of patients with a subarachnoid hemorrhage. The knowledge gained from this research will help improve patient care in the future.
Study Type
OBSERVATIONAL
Enrollment
1,000
None, observational study
Radboud University Medical Center
Nijmegen, Gelderland, Netherlands
RECRUITINGMaastricht University Medical Center+
Maastricht, Limburg, Netherlands
RECRUITINGModified Rankin Scale (mRS)
The Modified Rankin Scale (mRS) is a scale ranging from 0 to 6, where 0 indicates no symptoms and 6 indicates death. Higher scores indicate a worse outcome.
Time frame: 6 months ± 30 days after SAH
modified Rankin Scale (mRS)
The Modified Rankin Scale (mRS) is a scale ranging from 0 to 6, where 0 indicates no symptoms and 6 indicates death. Higher scores indicate a worse outcome.
Time frame: 18 months ± 30 days after SAH
Complications related to treatment of the ruptured aneurysm
Time frame: Periprocedural
Complications related to SAH
Time frame: During registry period (up to 18 months after SAH)
Degree of aneurysm occlusion
For endovascular treatment assessed by the modified Raymond Roy Classification
Time frame: Up to 18 months after SAH
Newly found aneurysm or other vascular malformation at additional imaging in patients with non-perimesencephalic primary angiogram negative SAH
Time frame: Up to 18 months after SAH
Patient reported outcomes (PROMS): SOS-SAH
The Questionnaire for the Screening of Symptoms in aneurysmal Subarachnoid Hemorrhage (SOS-SAH) is a disease-specific patient-reported outcome measure developed to screen for symptoms in patients after aSAH. It consists of 14 domains: cognitive abilities, hypersensitivity to stimuli, anxiety, depression, fatigue, social roles, personality change, language, vision, taste, smell, hearing, headache, and sexual function. It also includes a proxy measurement for use by family members to assess cognitive functioning and personality changes. External validation of the SOS-SAH is one of the objectives of this registry.
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.
Elisabeth-Tweesteden Hospital
Tilburg, North Brabant, Netherlands
Amsterdam University Medical Center
Amsterdam, North Holland, Netherlands
RECRUITINGIsala
Zwolle, Overijssel, Netherlands
RECRUITINGUniversity Medical Center Groningen
Groningen, Provincie Groningen, Netherlands
RECRUITINGErasmus University Medical Center
Rotterdam, South Holland, Netherlands
RECRUITINGHaaglanden Medical Center
The Hague, South Holland, Netherlands
RECRUITINGUtrecht University Medical Center
Utrecht, Utrecht, Netherlands
RECRUITINGTime frame: Up to 18 months ± 30 days after SAH
Patient reported outcomes (PROMS): Stroke Specific Quality of Life scale (SSQoL)
The Stroke Specific Quality of Life scale (SSQoL) assesses health-related quality of life, comprising 49 items across 12 domains. Items are rated on a 5-point Likert scale ranging from "total help needed" to "no help needed." Higher scores indicate better functioning.
Time frame: Up to 18 months ± 30 days after SAH
Patient reported outcomes (PROMS): EuroQol 5-Dimension 5-Level (EQ-5D-5L)
The EuroQol 5-Dimension 5-Level (EQ-5D-5L) assesses general health status across five dimensions: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression, each rated on a 5-level severity scale. Three scoring methods are used: (1) the EQ-VAS, a Visual Analogue Scale ranging from 0 to 100 where higher scores indicate better self-rated health; (2) the EQ-5D-5L health state, coded as a 5-digit number ranging from 11111 (full health) to 55555 (worst health); and (3) the EQ-5D-5L index value, calculated using the Dutch tariff, where higher scores indicate better health-related quality of life.
Time frame: Up to 18 months ± 30 days after SAH
Patient reported outcomes (PROMS): Hospital Anxiety and Depression Scale (HADS)
The Hospital Anxiety and Depression Scale (HADS) is a 14-item instrument comprising two subscales: one for anxiety and one for depression. Each subscale ranges from 0 to 21. Higher scores indicate greater symptom severity.
Time frame: Up to 18 months ± 30 days after SAH
Patient reported outcomes (PROMS): The Cognition scale of the CheckList for Cognitive and Emotional consequences following stroke (CLCE-C)
The Cognition scale of the CheckList for Cognitive and Emotional consequences following stroke (CLCE-C) is an instrument for identifying cognitive problems after stroke. It consists of 13 items addressing cognitive complaints, for each of which the respondent indicates whether the complaint is present or absent. The total score ranges from 0 to 13, where higher scores indicate more cognitive and emotional complaints.
Time frame: Up to 18 months ± 30 days after SAH
Patient reported outcomes (PROMS): iMTA Medical Consumption Questionnaire (iMCQ)
The iMTA Medical Consumption Questionnaire (iMCQ) is a generic instrument that measures medical consumption, including hospitalization days, contacts with health care providers, and medication use.
Time frame: Up to 18 months ± 30 days after SAH
Patient reported outcomes (PROMS): iMTA Productivity Cost Questionnaire (iPCQ)
The iMTA Productivity Cost Questionnaire (iPCQ) is a generic instrument designed to measure health-related productivity losses in paid and unpaid work.
Time frame: Up to 18 months ± 30 days after SAH
Patient reported outcomes (PROMS): The Cognition scale of the CheckList for Cognitive and Emotional consequences following stroke (CLCE-C)
The Cognition scale of the CheckList for Cognitive and Emotional consequences following stroke (CLCE-C) is an instrument for identifying cognitive problems after stroke. It consists of 15 items addressing cognitive and emotional complaints, for each of which the respondent indicates whether the complaint is present or absent. The total score ranges from 0 to 15, where higher scores indicate more cognitive complaints.
Time frame: Up to 18 months ± 30 days after SAH
Amsterdam Cognition Scan (ACS)
The Amsterdam Cognition Scan is a web-based digital cognitive test battery of approximately 60 minutes, consisting of 7 tasks assessing attention, memory, processing speed, executive functioning, and psychomotor speed.
Time frame: Up to 18 months ± 30 days after SAH