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11 IRB-HSR #8804 ADENOID CYSTIC CARCINOMA REGISTRY at The University of Virginia Charlottesville, Virginia Authorization for Disclosure of Protected Health Information and Release of Tissue and Pathology Specimens I,, hereby authorize (Print your name) (Name of Hospital) located in (Location of Hospital: City & State) to disclose the protected health information, pathology materials, and tissue described below to the Adenoid Cystic Carcinoma Registry (ACCR) at The University of Virginia for research purposes. This authorization covers all past, present, and future periods. I authorize the disclosure and release of: pathology)reports)and)laboratory)results)about)my)adenoid)cystic)carcinoma) information)from)my)medical)records)about)my)diagnosis)and)treatment)for) adenoid)cystic)carcinoma)(clinic)notes,)surgical)reports,)case)summaries,) chemotherapy)and)radiation)therapy)reports)) pathology)materials)from)my)adenoid)cystic)carcinoma)procedures)which)are) longer)needed)for)my)diagnosis,)care,)or)treatment)(glass)histology)slides,) paraffin)tissue)blocks)) any)tissue)left)over)from)my)surgery)procedures)for)adenoid)cystic) carcinoma)which)is)not)needed)for)my)diagnosis,)care,)or)treatment) I understand that I may revoke this authorization, in writing, at any time. I understand that my treatment, payment, enrollment, or eligibility for benefits will not be conditioned on whether I sign this authorization. (Signature) (Today s Date) (Medical Record Number or Last 4 Digits of SSN) (Date of birth) If you have pathology samples at more than one hospital, please fill out one copy of this form for each hospital. PLEASE DO NOT SEND THIS FORM DIRECTLY TO YOUR HOSPITAL! Please send the completed signed form to the ACCR and we will use it to request the samples after we have entered your information into the registry. Last revision: 10/23/2014
12 IRB-HSR #8804 ADENOID CYSTIC CARCINOMA REGISTRY at The University of Virginia Charlottesville, Virginia Contact information This information will be used only for the purpose of scientific and clinical studies. Address at which we may contact you by mail: Daytime phone number: Name of physician primarily responsible for your care: Address of physician (or name and location of hospital/clinic) Phone number of physician: Last revision: 10/23/2014
13 IRB-HSR #8804 ADENOID CYSTIC CARCINOMA REGISTRY at The University of Virginia Charlottesville, Virginia Registry data We are currently collecting information on adenoid cystic carcinoma that has arisen in the head, neck and thorax (trachea and lungs) in individuals 18 years of age or older. The following information may help us establish an overlooked association that can give us a clue to the cause of adenoid cystic carcinoma or find currently unidentified risk factors. Your privacy will be maintained by the use of code numbers when the data is released to researchers. No person contacting the ACCR will be given any information that could identify you. Date of birth: Your age at the time of diagnosis with ACC: Your sex: Your race and ethnic background: Your height at the time of diagnosis: Your approximate weight at the time of diagnosis: Which of the following environments have you lived in most of your life? Rural Suburban Urban Other Occupation/exposure history Your occupation over the majority of your life: Have you had exposure to any chemicals or irritating substances over a long time? If yes, what are they? Have you been exposed to radiation prior to your diagnosis of ACC?If yes, please explain. Tobacco use: no significant tobacco use Type of tobacco product: cigarettes cigars chewing tobacco snuff other Age when I started using tobacco: Age when I stopped using tobacco: I am still using tobacco: Over the time you used tobacco, how much did you use per day (number of cigarette packs, number of cigars, etc.)? Last revision: 10/23/2014
14 IRB-HSR #8804 ADENOID CYSTIC CARCINOMA REGISTRY at The University of Virginia Charlottesville, Virginia Alcohol use: Consider a serving as one can of beer, one glass of wine or one mixed drink. never or seldom drink alcohol 1-6 servings per week 7-14 servings per week servings per week more than 21 servings per week Most common form of alcoholic beverage consumed: beer wine distilled alcohol (whisky, rum, vodka, etc. straight or in mixed drinks) Medical history Did you have other medical conditions unrelated to adenoid cystic carcinoma, prior to this diagnosis? If yes, what are they, and how long have you had the conditions prior to your diagnosis with adenoid cystic carcinoma? Did you use any medications for a significant amount of time prior to your diagnosis? If yes, what was(were) the medication(s)? Location of the origin of adenoid cystic carcinoma: Don t know Side of face Inside mouth: under, in or around my tongue Inside mouth: the roof or the back of mouth Lips Nose or sinuses Inside neck Inside chest or lungs Other location Last revision: 10/23/2014
15 IRB-HSR #8804 ADENOID CYSTIC CARCINOMA REGISTRY at The University of Virginia Charlottesville, Virginia Which of the following symptoms preceded your diagnosis of ACC? (check all that apply) No symptoms, my doctor or dentist discovered it YES NO Length of time before diagnosis A swelling or lump A non-healing sore Pain (Where was the pain, and what did it feel like? Other symptom (Please describe First diagnosis of ACC Surgery for initial cancer Surgery for recurrent cancer Month Year Part of body Radiation therapy Chemotherapy If the radiation and chemotherapy were at a hospital other than the one in which you received surgery, please tell us its name and location: If your cancer has recurred or spread, and you have not already listed it above, please tell us in what part of your body this has happened, and when this was detected. Family history: Has there been any one else in the history of your family diagnosed with adenoid cystic carcinoma? If yes, what relation are they to you? Has there ever been any one else in the history of your family who has been diagnosed with any other kind of cancer? If yes, please fill out the following for each person with cancer as best you can: Relationship to you Type and/or location of cancer Age of diagnosis Last revision: 10/23/2014
16 IRB-HSR #8804 ADENOID CYSTIC CARCINOMA REGISTRY at The University of Virginia Charlottesville, Virginia Total number of your first degree relatives (your parents, brothers, sisters, and children), living or dead: Total number of your first degree relatives who have or had cancer: If you didn t have room to fully answer any of the above questions, please continue on another piece of paper. If there is anything else that you feel might have been a factor in developing cancer, please let us know. Please send these forms to: Adenoid Cystic Carcinoma Registry c/o Christopher A. Moskaluk M.D., Ph.D. UVA Health System Dept. of Pathology PO Box Charlottesville, VA We prefer regular mail, but if for some reason you wish to use a courier or express mail service please use: Adenoid Cystic Carcinoma Registry c/o Christopher A. Moskaluk M.D., Ph.D. UVA Health System Dept. of Pathology Room 3024 Hospital Expansion, 1215 Lee Street Charlottesville, VA PLEASE BE SURE THAT YOU HAVE SIGNED AND DATED THE CONSENT AND TISSUE RELEASE FORMS or we cannot enter you into the registry. Last revision: 10/23/2014
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