The Center for Information and Study on Clinical Research Participation (CISCRP ) is an independent non-profit organization, dedicated to including the voice of the community in the clinical research process. As part of our mission, we regularly engage with affected individuals and families through patient (or community) advisory board meetings, global surveys, and workshops to include the community voice in research endeavors.
At this time, CISCRP, together with a pharmaceutical company, is planning a virtual standing patient and caregiver advisory board meeting for Aneurysmal Subarachnoid Hemorrhages (aSAH). Over the course of a year (12 months) there will be up to 4 meetings and possibly online surveys to gather patient and caregiver feedback on a variety of topics related to clinical trials for aSAH.
What is the purpose of this patient advisory board?
This virtual patient advisory board will provide an opportunity for those who have experienced an aSAH to share their experiences with this condition, their views on what they would like an ideal treatment to address, what outcomes would be most meaningful, as well as share thoughts on a proposed clinical trial for this condition. This feedback will help the pharmaceutical company improve experiences for future study volunteers enrolled in clinical trials for aSAH.
The goal of the advisory board is not to recruit for a clinical trial, but rather to learn from patients how to best create a clinical trial that addresses the unique needs of individuals with this condition.
Who can participate?
CISCRP is looking for patients who feel comfortable sharing their experiences with aSAH.
Specifically:
* Adults over the age of 18 years old
* Have suffered a nontraumatic aSAH (ideally within the past 5 years)
* Reside in the Canada, Germany, or the United Kingdom
* Caregivers to individuals matching the profile above
When would the patient advisory board take place and what would it be like to participate?
The first touch point of this patient advisory board would take place in late January/ early February 2024 (exact date/time TBD). The meeting will be conducted virtually using an online platform (Zoom). As a thank you for your time, CISCRP will provide an honorarium to those who are eligible and participate.
If you are interested in participating in this opportunity or have any additional questions, please contact:
Kaitlin Gossart
Research Associate, Research Services |Center for Information & Study on Clinical Research Participation (CISCRP)
Phone: 617-725-2750 extension 413
Email: kgossart@nullciscrp.org
