MSK’s GODDESS™ Questionnaire is a clinically validated patient reported outcome measurement tool for use with Desmoid Tumors, also known as aggressive fibromatosis or deep fibromatosis. The GODDESS Questionnaire is now available for commercial licensing.
How does MSK’s GODDESS™ Questionnaire work?
Patient reported outcome (PRO) questionnaires, also known as patient reported outcome measurement (PROM) tools, can provide significant insights about many types of healthcare conditions and the patient experience. They are used widely by healthcare professionals, drug development companies, and academic research institutions.
MSK’s GODDESS™ Questionnaire consists of two scales that measure 28 items relating to Desmoid Tumors/Aggressive Fibromatosis (DT/AF). Patients self-report on matters such as DT/AF-related pain, disrupted sleep, fatigue, and other physical and emotional impacts, while providing their own assessments of the intensity of symptoms and other negative impacts. Together, these two scales help illuminate the DT/AF impact on functioning and daily living, with the goal of helping researchers and healthcare professionals better capture the patient experience, including effects of treatment.
With any PRO or PROM, the gold standard is clinical validation. The GODDESS™ Questionnaire has been validated in a Phase 3, randomized placebo-controlled clinical trial that found the questionnaire to be reliable, valid, responsive, and interpretable. (NCT03785964, Dec. 24, 2018). Learn more here.
What are Desmoid Tumors?
Desmoid tumors are non-metastasizing, locally aggressive neoplasms characterized by abnormal and excessive growth in connective-tissue areas. They rarely cause death, however, this rare but problematic health condition may be associated with painful symptoms and negative impact on patients’ health-related quality of life.
Depending upon where desmoid tumors are located, a patient’s symptoms may include pain, soreness or tingling, difficulty moving arms, hands, legs or feet, abdominal constipation or bloating, and even intestinal obstruction.
Who is affected by Desmoid Tumors?
In the U.S., about 1,000 to 1,650 people are diagnosed with this condition each year—amounting to less than 3% of all soft-tissue tumors. These tumors might attack almost any soft tissue, but most typically are found in the abdominal wall, intra-abdominal cavity, and patients’ extremities.
Men and women are equally susceptible to Desmoid tumors. These most often first occur in adolescents and young adults. Although the tumors are sometimes removed surgically, recurrence rates can vary widely, ranging from 20% to as high as 80%. At the moment, there are no FDA-approved therapies for patients with Desmoid tumors, however, healthcare professionals do seek to mitigate their symptoms.
How can MSK’s GODDESS™ Questionnaire help Desmoid Tumor diagnosis, treatment, and research?
The GODDESS™ Questionnaire can be used by healthcare professionals, drug development companies, and academic researchers in a number of significant ways, such as:
- Diagnosing patients, including as a way of measuring worsening or improving conditions
- Assessing treatments, including instances in which consideration of surgery may be appropriate
- Developing and testing new therapies for desmoid tumors
- Measuring outcomes in clinical trials involving desmoid tumor patients
STAGE OF DEVELOPMENT
Ready for use. Available for non-exclusive licensing by commercial institutions. Note that an electronic version is not currently available for licensing.
LEAD INVESTIGATOR
Mrinal M. Gounder, MD, Associate Attending, Department of Medicine, Memorial Hospital, MSK
CONTACT INFORMATION
E-mail: qotdtrm@mskcc.org