Reducing the burden of squamous cell carcinoma in Fanconi Anemia - Initial study questionnaire -
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1 Reducing the burden of squamous cell carcinoma in Fanconi Anemia - Initial study questionnaire - Today s Date (MM/DD/YYYY): / / Please note: If you do not want to answer a question, leave it blank. (Note for minors: We are required by law to share your questionnaire with your parent(s) or guardian(s) if they ask for it.) 1. Participant s Contact Information Participant s First name Last name Gender: Male Female Date of birth (MM/DD/YYYY) / / (If participant is a minor: contact information of parent(s) or guardian(s)): First name Last name Street City State Zip Country Adult participant or parent/guardian home phone Adult participant or parent/guardian mobile phone Adult participant or parent/guardian 2. Treating Physician s Information (Alternate name and address of the physician who could receive your data report.) Physician s name Institution/Hospital Street City State Zip Reducing the burden of SCC in FA - Protocol 24
2 Telephone 3. Diagnosis of Fanconi Anemia Date of diagnosis (MM/YYYY) Complementation group (if known) / Gene mutation(s) (if known) Maternal Paternal 4. Summary of Medical History (This information helps us understand the presentation of Fanconi anemia in your case.) Do you have anomalies due to FA? Yes No (If yes, please check all that apply): Cardiac Neurological Ears/Hearing Reproductive/Gynecological Endocrine Eyes/Vision Respiratory Thumb/Radius Gastrointestinal Skeletal Growth Skin Kidney Genital Other If other, please specify In case we need more information about a specific anomaly may we contact your physician? Yes No Do you have hematological manifestations (low blood counts)? Yes No Age of onset of decreased blood counts: 0 3y 4 10y older than 10y 5. Hematological Manifestations (Blood counts can help us evaluate whether you have a higher risk of infection in your mouth or a higher risk for bleeding.) What were your most recent blood counts? Date (MM/DD/YYYY) / / WBC ANC HGB PLTS Have you had a blood transfusion within the past 3 months? Yes No Did you have unusual bleedings within the past 3 months? Yes No If yes, please specify Did you have recurrent infections within the past 3 months? Yes No If yes, please specify Reducing the burden of SCC in FA - Protocol 25
3 6. Visible Oral Lesions Have you had a visible oral lesion that has stayed for at least 6 weeks? Yes No (If No, skip to question 7) Have you consulted a doctor/dentist about the lesion(s)? Yes No Site(s) of oral lesion(s) Was a biopsy performed? Yes No Type of diagnosed oral lesion: Leukoplakia Yeast Infection Cancer Erythroplakia Bacterial Infection Unknown Graft versus Host Disease Viral Infection Other If other, please specify If you received any treatment for your visible lesion please indicate: 7. Cancer History Have you ever been diagnosed with squamous cell carcinoma (SCC)? Yes No (If No, skip to question 8) Date(s) of cancer diagnosis (MM/YYYY) / / / Location of cancer(s) (please check all that apply): Mouth Esophagus Anus Cervix Pharynx Skin Vulva Other If other, please specify Did you develop metastasis of the cancers described above? Yes No Did you receive surgery for these cancer(s)? Yes No If yes, Date(s) (MM/YYYY) / / / Did you receive chemotherapy or equivalent? Yes No If yes, Date(s) (MM/YYYY) / / / Chemotherapy agent(s) used Frequency Did you receive radiation? Yes No Reducing the burden of SCC in FA - Protocol 26
4 If yes, year(s) (YYYY) Total Dosages (Gy) 8. Smoking Habits Have you ever smoked cigarettes regularly? Yes No (If No, skip to question 9) Cigarettes smoked per week on average? For how many years/months did you smoke regularly? Years Months If you stopped smoking, when did you stop (MM/YYYY)? / Do you (did you ever) consume regularly one ore more of the following: Pipe Water pipe Snuff Other Chewing tobacco Cigars Marijuana If yes to any of the above or other, please specify (kind, duration, amount, stopped, restarted): 9. Drinking Habits Do you (did you ever) drink alcohol occasionally or regularly? Yes No (If No, skip to question 9) How many drinks do (did) you usually consume on a drinking day? 1 drink 2 drinks 3 drinks 4 drinks 5 or more drinks How frequently do (did) you drink alcohol? Daily 2 times a week Once a month Nearly every day Once a week 6-11 times a year 3-4 times a week 2-3 times a month 1-5 times a year What kind of drinks do/did you prefer? Beer Wine / Champagne Hard Liquor Cocktails Other If other please specify For how many years/months did you drink regularly? Years Months If you stopped drinking, when did you stop? (MM/YYYY) / Additional information about drinking habits (e.g. stopped, restarted) Reducing the burden of SCC in FA - Protocol 27
5 10. Therapy (We want to find out if special kinds of treatments people with FA receive have an impact on the development of squamous cell carcinoma.) Did you receive any of the following treatments? Androgens Yes No Treatment duration (MM/YYYY) / Growth Hormones Yes No Treatment duration (MM/YYYY) / Bone marrow transplant (BMT) Yes No Date of BMT (DD/MM/YYYY) / / Radiation used? Yes No Graft versus Host Disease (GvHD)? Yes Acute Yes Chronic No Treatment agent(s) for GvHD used Frequency Other Therapy (please specify) Treatment duration (MM/YYYY) / 11. HPV (We want to find out if HPV has an impact on the development of squamous cell carcinoma in FA.) Have you had the HPV vaccine? Yes No If yes age(s) at vaccination Name of vaccine: Gardasil Cervarix other (please specify) Has the participant ever had a HPV infection? Yes No Not known 12. Questions related to the Microbiome Study (Answering these questions will help us conduct the microbiome assay. Leave these questions blank if you do not want to answer.) Did you receive one or more antibiotic treatments within the past 3 months? (Antibiotics may affect the microbiome in your mouth.) Yes No If yes, please specify: Name of antibiotic Name of antibiotic Name of antibiotic Treatment duration (days) Treatment duration (days) Treatment duration (days) Reducing the burden of SCC in FA - Protocol 28
6 13. Questions related to the Salivary Biomarkers Study (Answering these questions will help us conduct the Salivary Biomarkers study. Leave these questions blank if you do not want to answer.) What is your ethnicity? Caucasian Asian I rather not say African American Hispanic Other If other please specify Do you have: Diabetes Type I Hepatitis Diabetes Type II (Insulin dependent) HIV Do you have prior history of cancer (other than squamous cell carcinoma)? Yes No If yes, please describe briefly (where and date only): Do you have a family history of cancer? Yes No If yes, please indicate the kind of cancer (breast, rectal, lung, etc.): Reducing the burden of SCC in FA - Protocol 29
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