SIR Foundation registries

National quality registry for interventional radiology

The new National Radiology Data Registry for Interventional Radiology, led by the Society of Interventional Radiology and the American College of Radiology, is scheduled to be available in the spring of 2016. Designed to promote quality of care for patients undergoing interventional radiology procedures, the registry will enable the collection of performance measures for image-guided interventional procedures. [… Learn more]

Registry formation

Are you interested in starting a registry?

One of the principal tenets of the SIR Foundation’s mission statement is the fostering of research in interventional radiology for the purposes of advancing scientific knowledge, increasing the number of skilled investigators, and developing innovative therapies that lead to improved patient care and quality of life. The Foundation is committed to fostering the development and enhancement of innovative, minimally invasive, image-guided therapies from inception to mature clinical application and to conduct educational programs in the service of its mission.

If you are interested in working with the foundation and have an idea you feel is viable toward the creation of a new registry, SIR Foundation wants to hear about it.

Sarah B. White, M.D., SIR Foundation clinical research trials division chair, requests that you submit an application and provide additional  information (noted on the form).  Applications will be reviewed by selected foundation officers and board directors. If there is interest in funding the idea the foundation will provide a timely response. If the response is positive, further direction will follow to include a request for a grant application and/or project plan, timeline and resource request.

Questions? Contact Eleanore Moye SIR’s Senior manager of clinical research or Tresha Russell, SIR’s director of quality and outcomes.

About SIR's Uterine Fibroid Symptom Health-related Quality of Life Questionnaire (UFS-QOL)

The Uterine Fibroid Symptom Health-Related Quality of Life Questionnaire (UFS-QOL) is a tool specifically designed to assess the symptoms associated with uterine fibroid tumors. It was developed by SIR Past President James B. Spies, M.D., MPH, FSIR, in conjunction with the RAND Corporation, and is currently in use by several research groups.

The UFS-QOL is a self-reported questionnaire used to measure both a patient's objective pre-treatment and post-treatment symptoms (i.e. bleeding, cramping) and subjective experience (i.e. a patient feeling "blue" or "less productive"). Answers to the questionnaire may indicate the severity of the patient's condition without more invasive measures, and could subsequently aid in determining treatment.

The UFS-QOL is available for use in research studies. To request use of this questionnaire, complete the UFS-QOL Request Form.

Please note that if the research study is industry-related, the Society of Interventional Radiology Foundation requires payment for the use of the UFS-QOL.

FAQs

Q: What is the UFS-QOL?
A: The Uterine Fibroid Symptom Health-Related Quality of Life Questionnaire (UFS-QOL) is a highly effective research tool. It is a survey given to be women over the age of 21 who have been diagnosed with uterine fibroid tumors.

Q: What kinds of questions does the UFS-QOL ask?
A: It asks questions about physical health, emotional effect and concerns regarding the impact of uterine fibroid tumors on the patients, using a 1-5 scale of severity. The questions the UFS-QOL uses are designed to give an overall picture of a patient's quality of life as it pertains to her condition. The questionnaire asks about symptoms experienced by women who have uterine fibroid tumors as well as how those symptoms have impacted their lives.

Q: How is the UFS-QOL currently used?
A: The UFS-QOL is being used in several research projects, both industry-funded and independently funded.

Q: What can the UFS-QOL offer me?
A: The UFS-QOL can be instrumental in discriminating between normal women and women with uterine fibroids, as well as helpful in detecting varying signs of symptom severity and impact on quality of life, without the use of more invasive procedures.

Q: How can I obtain a copy of the UFS-QOL?
A: The questionnaire is available for use in SIR Foundation-approved studies and requires execution of a legal agreement. The questionnaire is free of charge to SIR members and for institutional use. Please note however, that for research conducted by industry, a fee is required.

Q: Is the UFS-QOL available in electronic version?
A: There is a PDF version only.

Q: Is the UFS-QOL offered in any other languages?
A: Yes. The SIR Foundation will provide the validated English version of the UFS-QOL per the current legal agreement. Copies of any of the additional languages can be provided free of charge after the agreement is executed. See the UFS-QOL Request Form for further details on the types of language we currently offer.

Q: Once I submit the UFS- QOL Request Form how soon can I expect to receive a response?
A: We will respond to your request within 2-3 business days.

Q: Do I need to provide proof of payment before receiving a copy of the Questionnaire?
A: Yes. We must receive a proof of payment before we can process your request.

Q: How much would it cost to use the UFS-QOL questionnaire if this is an industry request?
A: $2,500 for the English version.

Q: If I request the same language for two studies would there be an additional charge?
A: No, charges for use of translated questionnaires are one-time.