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Human gene therapy and clinical trials involving recombinant or synthetic nucleic acid molecules are becoming increasingly more common on medical research campuses, including here at the University of Kentucky (UK). Being among the cutting edge of medical research, these trials sometimes involve materials and techniques that fall under both federal and institutional regulations, in addition to those of the US Food and Drug Administration (FDA) and UK Institutional Review Board (IRB).  

Common Clinical Studies Requiring UK Institutional Biosafety Committee (IBC) Registration

Clinical studies utilizing the biohazardous materials described below require registration with the UK IBC. 

 Investigational products (IP/IMP/Study Agent) that contain: 

  • Live virus (ex. Live/attenuated vaccine candidates) 
  • Infectious Agents (ex. bacteria, viruses, fungi, prions, parasites) 
  • Recombinant or synthetic nucleic acid-based agents and agents that have the ability to genetically alter a patient’s cells (ex. gene therapy viral vectors, siRNA, anti-sense oligonucleotides, mRNA vaccines, LNP – lipid nanoparticle delivered nucleic acids) 
  • Genetically modified cell products/therapies, (ex. allogeneic or autologous CAR-T cells, and other genetically engineered cellular products)  
  •  Studies that handle patient samples or registerable investigational products in a research laboratory (ex. Handling patient blood or tissues in a research lab outside of the patient’s routine clinical care, pre- or post-administration of product.) 
  • Specimen Biobanks/Repositories

Protocols containing these key words may require IBC registration:

  • Gene transfer/therapy
  • Gene expression, editing, modification, engineering
  • Nucleotide; Oligonucleotide; Antisense Oligonucleotide (ASO)
  • Pathogen/Pathogenic (exposing subjects to...)
  • Recombinant and/or synthetic nucleic acids (mRNA, DNA, RNA, siRNA)
  • Virus
  • Bacteria
  • Live/attenuated vaccine
  • Vector
  • Viral vector (ex. adenovirus, adeno-associated virus, lentivirus, retrovirus, vaccinia virus, oncolytic virus)
  • Immunotherapy
  • Cloning
  • CAR T therapy
  • Toxin (administered to subjects)
  • Infectious
  • Allogeneic/Autologous
  • Cellular product/component

Note: If a study’s investigational product is not determined to require IBC registration, but patient samples are being sent to a research laboratory on UK’s campus for analysis and/or storage, please check with the Office of Biological Safety.

Regulations & Guidelines

NIH Guidelines for Research Involving Recombinant or Synthetic Nucleic Acid Molecules

The University of Kentucky (UK) receives funding support from the National Institutes of Health (NIH). As a condition of NIH funding support, all work conducted at UK must comply with the NIH Guidelines, irrespective of the source of funding. As such, research subject to the NIH Guidelines must be registered with the UK IBC. 

Human Gene Transfer (HGT) as defined by the NIH Guidelines can be found in Section III-C: Experiments Involving Human Gene Transfer that Require Institutional Biosafety Committee Approval Prior to Initiation

Section III-C-1.  Experiments Involving the Deliberate Transfer of Recombinant or Synthetic Nucleic Acid Molecules, or DNA or RNA Derived from Recombinant or Synthetic Nucleic Acid Molecules, into One or More Human Research Participants 

Human gene transfer is the deliberate transfer into human research participants of either: 

  1. Recombinant nucleic acid molecules, or DNA or RNA derived from recombinant nucleic acid molecules, or 
  1. Synthetic nucleic acid molecules, or DNA or RNA derived from synthetic nucleic acid molecules, that meet any one of the following criteria: 
  1. Contain more than 100 nucleotides; or 
  1. Possess biological properties that enable introduction of stable genetic modifications into the genome (e.g., cis elements involved in integration, gene editing); or 
  1. Have the potential to replicate in a cell; or 
  1. Can be translated or transcribed.
It is the policy of the UK IBC that ALL clinical studies that involve the deliberate transfer of recombinant or synthetic nucleic acid molecules into human research participants, even that which is exempt from IBC registration according to the NIH Guidelines, must be registered with the UK IBC.  

 

EXCEPTIONS - The following are NOT subject to the NIH Guidelines and DO NOT require UK IBC registration:

  1. The deliberate transfer of recombinant or synthetic nucleic acids into one human research participant, conducted under a Food and Drug Administration (FDA) regulated individual patient expanded access Investigational New Drug (IND) or protocol, including for emergency use, is not research subject to the NIH Guidelines and does not require UK IBC review and approval.  
  1. Use of an FDA approved or authorized product for the treatment of a clinical indication. 

FDA Center for Biologics Evaluation and Research (CBER)

The United States Food and Drug Administration (FDA) Center for Biologics Evaluation and Research regulates cell therapy products, human gene therapy products, and certain devices related to cell and gene therapy.  

 

Cellular therapy products include cellular immunotherapies, cancer vaccines, and other types of both autologous and allogeneic cells for certain therapy indications. Human gene therapy seeks to modify or manipulate the expression of a gene or to alter the biological properties of living cells for therapeutic use. 

 

Cellular and gene therapy guidance documents are available from the FDA CBER online HERE

Registering Clinical Studies with the UK IBC

Registration of a clinical study with the IBC requires the use of the tick@lab by a-tune web-based software located here. It is highly encouraged that you enlist the assistance of a member of the Biosafety Team when drafting a clinical IBC registration. This ensures that pertinent information is collected and listed on the registration appropriately, in a timely manner before going for review. Clinical/administrative staff delegated the task of completing the IBC registration form may experience some difficulties sufficiently completing areas of the form. It is important to note that per the NIH Guidelines, the PI (Principal Investigator) is ultimately responsible for all research activities, the information included in an IBC registration, and the complete and accurate disclosure of information for the purposes of the IBC registration. Registration guidance specific to clinical IBC registrations is outlined below. 

When notified, a member of the Biosafety Team will guide you through and aid in the drafting of the registration. When navigating tick@lab by a-tune on your own, keep these helpful tips in mind for a successful experience. Please reference the How-To guides for navigating tick@lab by a-tune in our reference library, located here. Also, please ensure your internet connection is consistent and stable when utilizing the software, tick@lab by a-tune is a web browser-based software. Save your work often in tick@lab by a-tune, as there is not an “auto-save” feature. 

An IBC registration & approval consists of a “cradle-to-grave” evaluation of the product and procedures, including but not limited to: 

  • Shipping/Receiving 
  • Storage of investigational product and specimens 
  • Preparation/Dispensing 
  • Transport 
  • Investigational product administration 
  • Waste disposal and disinfection 
  • Patient sample handling 
  • Safety training 
  • Locations 

 

This information must be gathered by the PI/UK study team. Biosafety Team members are not responsible for the direct gathering of this information. The PI and study coordinators are responsible for gathering and providing required information to Biosafety Team members. It is the responsibility of the PI and study coordinators to contact the study sponsor as necessary, when additional information is required. 

 

As the IBC registration form is completed, please take note of the help text provided on each question. Additionally, as some of the questions are completed, additional help text will appear with a response and provide additional guidance. This information is intended to assist the PI/authors of the registration in identifying the NIH Guidelines and other regulations that may apply to the proposed work in the registration. Always read all the form text in each question carefully and answer appropriately.  

 

Be aware that the IBC registration form was created to be able to register all types of research involving potential biohazards, including studies with plant and animal research. Not all sections/questions may apply to the work proposed, but please keep in mind that the registration form cannot be submitted unless all questions are answered.  

 

Getting Started: Clinical IBC Registration Checklist

Here is a short checklist of information that will be required to begin the registration process of a new clinical IBC registration. 

  • List of all study personnel (physicians, nurses, pharmacists, research staff, shipping staff, etc.) 
  • UK site-specific study locations (Clinics, Pharmacies, Units, related academic research labs, etc.) 
  • Study documents (Investigator’s Brochure, Study Protocol, Pharmacy Manual, etc.) 
  • UK site-specific procedures (Description of the investigational product’s journey from receipt to administration to disposal.) 
  • Current copy of PI’s curriculum vitae (CV) 

Study Personnel

Before beginning to work in the registration system, please email a list of personnel (with linkblues) involved in the study to the Biosafety Team member you have been in contact with, or the Biosafety Office (biosafety@uky.edu). This information will be used to ensure personnel are available to be added to the IBC registration and for training verification. All personnel that would handle or otherwise come into contact with the investigational product or related patient samples (ex: UK Healthcare staff, pharmacy staff, shipping staff,) and the PI/Co-PIs, should be included in this list. If you will serve in an administrative-only role on the study (coordinator, regulatory staff, etc.), please note this in the IBC protocol registration. Anyone involved in an administrative-only role is not permitted to handle, transport, or ship investigational product or associated patient samples, related to the IBC registration. 

All personnel handling or administering investigational product must be listed as personnel on the registration and complete required safety training. This may include but is not limited to individuals that: 

  • Receive and store the investigational product 
  • Prepare and/or dispense the investigational product 
  • Transport the investigational product from one location to another (ex: from pharmacy to clinical area) 
  • Administer the investigational product to patients 
  • Administer patient care immediately after the product is administered (post-administration) 
  • Dispose of the investigational product (this does not include housekeeping staff who may dispose of waste bins) 
  • Ship patient samples or investigational product offsite for further analysis 

Training

Please check with your Biosafety Team member or the Biosafety Office for specific training requirements. Training guidance and frequency are referenced here. Required training is available on-demand online. Required training includes: 

  • DOT/IATA (Shipping Dangerous Goods) (EH&S Training site) (for personnel who will handle, package, and ship patient samples, investigational products, or other hazardous materials) 

*There is no UK Healthcare substitution for Biological Safety Training.  

**Personnel who have already completed UK Healthcare’s training WBT “Workplace Safety”, may provide a copy of this certificate in substitution for both the Chemical Hygiene Plan Laboratory Safety and Hazardous Waste training modules. 

***Personnel who have already completed UK Healthcare’s training WBT “Bodily Fluid Exposure Bloodborne Pathogens” may provide a copy of this certificate in substitution for the Blood Borne Pathogens for Researchers module.  

Please note that all required training must be completed before final IBC approval is issued. 

Clinical Biosafety Inspection

An inspection, by the Office of Biological Safety, of all locations listed on the registration is required before final IBC approval may be issued. Attention will be paid to signage, available PPE, disinfection, disposal, facility conditions, and patient isolation from non-listed personnel or unenrolled participants. For clinics actively involved in patient care, an annual Clinical Biosafety Inspection can be scheduled and performed, to minimize disruption to operations and ongoing patient care throughout the year. A member of the Biosafety Team will coordinate these annual inspections with the heads of each clinical unit associated with an IBC registration.  

Study Locations

All locations where the investigational product is stored, prepared, administered, or otherwise handled should be listed in the “Locations” section of the registration form. This would include the pharmacy location(s), patient treatment areas or clinics, and the UK Healthcare Cell Therapy Lab, as applicable. In addition to these areas, any specimen/tissue/biobank locations and academic research laboratories involved with the study should be listed. If patient samples will be processed in a CLIA-certified and inspected clinical laboratory within UK Healthcare, that location does not need to be included in this section, but please make a statement to this effect in the “Scientific Summary” section of the IBC registration. 

If the clinical study being registered will be administered at a remote University site, please consult with the Biological Safety Officer. 

UK Site-Specific Procedures & Scientific Summary

The “Scientific Summary” free-text field of the IBC registration requires special attention. This section of the registration should provide IBC reviewers with all the details necessary to make an informed risk assessment. This should include pertinent study background information (including non-clinical and clinical study data), study plan, risks, mitigations, and site-specific details. Please do not simply paste the entire study document(s). While the information in the study documents is useful, some of it does not pertain to the biosafety considerations of the clinical study. The information provided should be specific to the biohazardous risk(s) of the study, the materials and procedures involved, and the mitigation steps employed to minimize risk.  

Below is an outline of the sections and information of particular interest within the “Scientific Summary”: 

  • Rationale/Summary/Mechanism of Action  
  • Abbreviations List 
  • List and define all abbreviations in use, including common abbreviations. 
  • Study Design 
  • Often found in the Study Protocol 
  • Non-Clinical Studies Summary  
  • Often in the Investigator’s Brochure 
  • Clinical Studies Summary 
  • Often in the Investigator’s Brochure 
  • Manufacturing and Safety  
  • How is the investigational product manufactured? 
  • What standards and/or guidelines are followed during manufacturing? 
  • What procedures & biological materials are used? 
  • What quality control assays are performed before product release? 
  • What are the anticipated risks posed by the investigational product? 
  • Sample Collection, Handling, and Shipping 
  • What samples will be collected? 
  • Where are samples collected? 
  • Where will they be handled/processed?  
  • How are samples transported between campus locations? 
  • Will they be shipped offsite? If so, where? 
  • UK Site-Specific Procedures 
  • Cradle-to-grave approach 
  • Where will investigational product be received, stored, prepared, dosed, transported, administered, and disposed? 
  • How many patients will be enrolled at UK? 
  • How are potentially contaminated surfaces decontaminated?  

The following documents should also be provided in the registration: 

  • Investigator’s Brochure (sponsor provided) 
  • Study Protocol (sponsor provided) 
  • Pharmacy Manual (sponsor provided) 
  • Any sponsor provided training materials for clinical staff 
  • Site-specific SOPs and related documents 
  • Patient Consent Form 
  • PI’s Curriculum Vitae (CV) 
  • Any additional  reference information 

Submission of IBC Registration

The PI is the only person allowed to perform the electronic signature and acknowledgment step to submit the IBC registration for review, via the “Sign & Submit” workflow within tick@lab by a-tune. These steps are detailed in all of the How-To Library documents and also outlined here

Amending, Renewing, or Closing Clinical IBC Registrations

Amendments

Changes to the clinical study must be reflected in an amendment to the clinical IBC registration. Changes that necessitate an IBC amendment include, but are not limited to: 

  • Addition/changes of personnel 
  • Addition/changes in locations 
  • Changes in the investigational product 
  • Changes in dose amount, or frequency of administration of the investigational product 
  • Changes in investigation product handling, or administration procedures at the UK study site 
  • Changes in the population enrolled in the study (ex: study drug will now be given to children or sufferers of a different disease) 
  • Updated product literature 

Instructions for the creation and submission of an IBC amendment are available in the How-To reference library, here. It is highly encouraged that you contact the Office of Biological Safety to assist you with any clinical IBC registration amendments. 

Renewals

IBC registrations are approved for a period of three (3) years. The clinical study’s PI and co-investigators will be contacted by the Office of Biological Safety well in advance of the IBC registration’s expiration. Please consult with a member of the Biosafety Team if you have questions or are uncertain about renewing your registration.  

Closing an IBC Protocol

If a clinical study has concluded, an amendment to close the IBC registration may be submitted before the registration’s expiration date. Please consult with a member of the Biosafety Team if you wish to close your IBC registration.