Crispr Cas 9/TAPUR -What They Mean For the Future For Patients

What is CRISPR-CAS 9?

crystal_structure_of_crispr-cas 9_in_complex_with_guide_rna_and_target_dna

The CRISPR-CAS 9 system is a unique tool that allows scientists to make precise, targeted changes to the genome by deleting, replacing or inserting parts to specific locations in the DNA sequence.

CRISPR-CAS 9 cuts time in half for genome sequencing and is more effective for researchers analyzing genomes, RNA, and proteins of various diseases.  CRISPR-CAS 9 also offers great hope certainly for the rare disease patient community, especially as it relates to future immunotherapy breakthroughs for LMS.

How It Works:


The Targeted Agent and Profiling Utilization Registry (TAPUR) study is a clinical trial for people with advanced cancer whose cancer is no longer responding to standard treatment or for whom there is no standard treatment available.
A patient’s cancer must also have a potentially actionable genomic variant already identified through a genomic test  –talk to your oncologist about this for more information about participating in a TAPUR study and the genomic testing step.
The TAPUR study aims to:  
  • learn whether approved drugs might work against different cancers
  • find out how genomic or molecular tests are used to care for people with advanced cancer
  •  use the study results to help inform future studies and aid in the care of people with cancer
  • provide patients with access to therapies which may benefit them 
The TAPUR STUDY website will have information about the eligibility of the study;  latest news and study announcements, the list of drugs available in the study, and a current listing of study sites in the country.

Reaching For the Cure Together

The International Leiomyosarcoma Research Roundtable launches in 2019.  More information will follow as this initiative will help further advance LMS -specific investigational research.
The LMS COMMUNITY LIVE SUPPORT HELPLINE is open  9 am - 9 pm ET:  888-264-4670.
Consent to donate your tumor tissue before surgery.  For details go to:
Contribute to LMS Research 
"Invest" in Research - Support / Contribute to LMS Research Projects for 2018 -Click here for more info