Did you know that your experience as a cancer patient, and especially your opinions about treatments and side effects, can help shape the future of cancer treatment? The development of new drugs and treatments for cancer is a complex process, but as always, the ultimate goal is to develop better treatments with improved health and quality-of-life outcomes. To get keener insight into patient needs, it’s becoming more common for pharmaceutical companies to engage patients in the earliest stages of their research and development (R&D) process. Patient engagement at this stage typically involves participating in interviews or surveys in which patients are asked about their experiences with their diagnosis and treatment.

Playing an important role in reducing the incidence, morbidity, or mortality of cancer isn't necessarily limited to patients. Sometimes, it is the experience of survivors, caregivers, or family and friends that can help shape the future of cancer prevention, detection, and treatment.

HNCA occasionally partners with research organizations regarding studies related to oral, head and neck cancer. When we do, you may have the opportunity to influence the development of future treatments that will benefit cancer patients and their families for years to come.

Active Research

Graduate Student Research Study Seeking Participants:
Help Doctors and Healthcare Professionals Research Ways to Improve Oral Care Education for Patients with Head and Neck Cancer

This research study seeks to understand oral care routines (e.g., brushing your teeth, using mouthwash, etc.) of head and neck cancer patients and how information about oral care has been provided by your healthcare team after you were diagnosed with cancer.

To participate, you must:

  • Be 18 years of age or older
  • Have been diagnosed with head and neck cancer
  • Have completed radiation therapy within the past 12 months
  • Participants will be asked to complete an online research survey that is estimated to take between 20-30 minutes to complete.

Participants will be asked to complete an online research survey that is estimated to take between 20-30 minutes to complete.

The survey can be taken online at http://eiu.co1.qualtrics.com/jfe/form/SV_bDwppxIIrCVuS21

A paper copy of the survey is also available upon request if paper is preferred.

If you’re interested in participating or learning more about this study, please contact Lynne Barcus, M.S., CCC-SLP, lnbarcus@eiu.edu, 217-549-0407


Men Offering Understanding of Throat HPV (MOUTH)

Johns Hopkins researchers are seeking male volunteers, ages 30 and older, who have performed oral sex on more than one partner in their lifetime, men and women with history of anal or genital dysplasia or cancer, or partners of patients with HPV-related cancer (head and neck, genital or anal). This study will help researchers understand markers for oral HPV infection and may help to develop better screening for oropharyngeal cancer. You will complete a survey and provide an oral rinse, blood, saliva and urine samples.

Principal Investigator: Dr. Gypsyamber D’Souza
JH SOM eIRB#: IRB00119537

1-866-792-4622 (HNCA)


Recent Posts



I remain optimistic and use my humor as a tool for survival. I’ve lost approximately 45 pounds through this journey, and I had the weight to lose, but I tell people I wouldn’t recommend the cancer diet!Gail Jackson
Survivor of HPV-attributed Tonsil Cancer


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