Biobank and Registry for Interventional Genomics at UCSF

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational program at UCSF creates a biobank and patient registry focused on interventional genomics. It uses in silico and in vitro analyses to identify pathogenic variants and to evaluate the potential editability of variants across the human genome. The effort involves reviewing clinical data and specimens to determine relevance and to explore how gene editing tools might specifically address genetic diseases. Enrollment includes patients or their families who consent to participation and data sharing for registry and biobanking purposes. The project emphasizes observational data collection and methodological exploration rather than clinical intervention at this stage.

Why it matters

Who can join: the full rules

Inclusion Criteria:

For initial screening and discussion at huddle call:

* Male and female individuals of any age, including pregnant women and their fetuses at any gestational age.
* Self-referred or referred through their provider to the UCSF Center for Genome surgery/Interventional Genomics Board for a condition that is genetic or suspected to be genetic in origin.
* UCSF patient OR consents to allow for their case to be presented at the IGB huddle.

For enrollment into registry or biobanking:

* Any above participant that the IGB agrees would be appropriate for enrollment in the registry and biobanking portion of this protocol OR Any male or female family member of any age of someone enrolled in the registry and biobanking portion of this protocol.
* Provides informed consent for participation in the registry and biobanking portion of the protocol.

Exclusion Criteria:

For initial screening and discussion at huddle call:

* Individuals who have previously been discussed by the IGB and determined to not be appropriate to move forward into the registry and biobanking portion of the protocol, unless new information related to their case may change the initial assessment.
* Individuals who are not impacted by a genetic or suspected genetic condition.

For enrollment into registry or biobanking:

-Any participant that the IGB agrees is inappropriate for enrollment in the registry and biobanking portion of this protocol.

Where it's running

• University of California, San Francisco
  San Francisco, California, United States Recruiting

Study contacts

• Principal investigator: Tippi Mackenzie, MD — University of California, San Francisco
• Study coordinator: Emma Canepa
• Email: Emma.Canepa@ucsf.edu
• Phone: (415) 476-7255

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.