STXBP1 Clinical Outcome Measures & Biomarker Consortium (“SCOMB”)
The STXBP1 Foundation is a parent-led 501(c)3 non-profit organization dedicated to creating awareness and finding a cure for STXBP1 disorders.
The Foundation has created the STXBP1 Clinical Outcome Measures & Biomarker Consortium (SCOMB) to bring together researchers, healthcare providers, advocates, pharmaceutical companies, and other stakeholders to facilitate the development of clinical outcome measures and biomarkers to ensure that innovative and effective new medicines and therapies are developed for the treatment of STXBP1 Disorders.
The SCOMB will be directed by the STXBP1 Foundation, meetings will take place quarterly. The SCOMB may create Working Groups to focus on specific areas of interest and potentially develop separately funded projects. Working Groups will meet on their own schedule.
Participation in SCOMB and Working Groups is voluntary and can be revoked at any time.
Information and/or data shared by participants in SCOMB meetings and Working Groups is at the discretion of the presenter and is not bound by any confidentiality agreement. Separately funded projects developed by Working Groups will be further defined on a per project basis as required by the respective subject matter.
By signing this participation form, signor agrees to participate meaningfully in the SCOMB and attend quarterly meetings. Participation in all future projects will be determined by separate agreement.
Participation Form