Please enter today s date: / / MM DD YYYY BASIC INFORMATION

Transcription

1 CHOICE Survey Please enter today s date: / / MM DD YYYY BASIC INFORMATION 1. In what year were you born? Please enter the year in which you were born as 4 digits in the boxes below (for example, 1965 ). Year: 2. Are you female or male? Female Male 2013 Hemophilia Federation of America. All rights reserved. 1 NOT FOR DISTRIBUTION. DO NOT COPY.

2 CHOICE Survey DIAGNOSIS INFORMATION 3. What is your bleeding disorder diagnosis? Mark all that apply: Hemophilia A, Classic hemophilia or Factor VIII (eight) deficiency. Please mark severity: Mild Moderate Severe Not sure/do not know severity Hemophilia B, Christmas disease or Factor IX (nine) deficiency. Please mark severity: Mild Moderate Severe Not sure/do not know severity von Willebrand (vwd) disease. Please mark type: Type 1 Type 2 Please mark subtype, if known. 2A 2B 2M 2N Type 3 Other vwd Type Not sure/do not know Factor I (one) deficiency, including fibrinogen (fi-brin-o-gen) deficiency; afibrinogenemia (A-fi-BRIN-o-gen-E-me-ah); hypofibrinogenemia (HI-po-fi-BRIN-o-gen-E-me-ah) and dysfibrinogenemia (DIS-fi-BRIN-o-gen-E-me-ah) Factor II (two) deficiency, including prothrombin (pro-throm-bin) deficiency; hypoprothrombinemia (HI-po-pro-THROM-bin-E-me-ah) and dysprothrombinemia (DIS-pro-THROM-bin-E-me-ah) Factor V (five) deficiency Factor V-VIII (five and eight) deficiency Factor VII (seven) deficiency Factor X (ten) deficiency Factor XI (eleven) deficiency or Hemophilia C Factor XIII (thirteen) deficiency PAI-1 deficiency or plasminogen (plas-min-o-gen) activator inhibitor-1 deficiency α 2 anti-plasmin (AL-fa 2 AN-ti PLAS-min) deficiency or α 2 -AP Platelet disorder Please mark specific diagnosis, if known. Glanzmann s thrombasthenia (GT) Bernard Soulier syndrome (BSS) Grey platelet syndrome (Alpha storage pool disease; Alpha SPD; GPS) Hermansky-Pudlak syndrome (HPS) Inherited thrombocytopenia (THROM-bo-cy-to- PEE-ne-ah) Platelet storage pool defect (SPD; platelet secretion disorder) Platelet release defect Other platelet disorder Do not know Other bleeding disorder diagnosis not listed above (please tell us what your diagnosis is) 2013 Hemophilia Federation of America. All rights reserved. 2 NOT FOR DISTRIBUTION. DO NOT COPY.

3 CHOICE Survey 4. How old were you when you were first diagnosed with a bleeding disorder? Please report your age at diagnosis as specifically as possible as before birth or in days or months or years. For example, if you were 3 weeks old, report 21 days. If you are not sure exactly how old you were when diagnosed, please give an approximate age. Before birth or days or months or years 5. Has anyone else related to you by blood been diagnosed with the same bleeding disorder? No Do not know 2013 Hemophilia Federation of America. All rights reserved. 3 NOT FOR DISTRIBUTION. DO NOT COPY.

4 CHOICE Survey TREATMENT INFORMATION 6. Have you used any medications, treatments, or surgeries to treat your bleeding disorder in the last 12 months? No (Skip to Question 6b) 6a. If yes, please mark all medication, treatments, and surgeries you have used in the last 12 months: Factor VIII and VWF Factor Concentrates Recombinant FVIII Examples: Advate, Helixate FS, Kogenate FS, Recombinate, Xyntha, Xyntha/ReFacto Monoclonal FVIII Examples: Hemofil M, Monarc-M, Monoclate-P Plasma-derived FVIII containing VWF Examples: Alphanate, Humate-P, Koate- DVI, Wilate Porcine factor VIII Factor IX Factor Concentrates Recombinant FIX Example: BeneFIX Plasma-derived FIX Examples: AlphaNine SD, Mononine Prothrombin complex Examples: Bebulin, Bebulin VH, Profilnine SD By-passing Concentrates Activated prothrombin complex Examples: FEIBA NF, FEIBA VH Concentrates of other factors Examples: Autoplex T, NovoSeven (FVIIa) Other Concentrates of other factors Examples: NovoSeven (FVIIa), Fibrogammin P (FXIII), Corifact (FXIII), Recombinant factor XIII, RiaSTAP (fibrinogen, FI) Blood bank products Examples: Cryoprecipitate, Fresh-frozen plasma (FFP), Platelets, Packed RBCs, Whole blood Non-plasma and topical products Examples: DDAVP (Subcutaneous and Intravenous desmopressin), Stimate (Nasal desmopressin), Amicar (Aminocaproic Acid), Fibrin glue, Cyclokapron (Tranexamic acid), Lysteda (Tranexamic acid), Topical thrombin (Evithrom, Thrombin-JMI) Hormonal contraceptives Examples: oral contraceptives, Mirena IUD, hormone patch, hormone ring, hormone implant Gynecological surgery Examples: hysterectomy, uterine artery embolization, endometrial ablation, dilation and curettage (D&C) Other surgery or procedure Example: nasal cauterization Other Products Not Listed Above If the product or products that you have used to treat your bleeding disorder is not listed above, please mark the box below and tell us what you use. Other (please provide name of medication) 2013 Hemophilia Federation of America. All rights reserved. 4 NOT FOR DISTRIBUTION. DO NOT COPY.

5 CHOICE Survey 6b. If you use clotting factor concentrate (factor), what is the primary reason you use it? I primarily use it to prevent bleeds from happening I primarily use it to treat bleeds when they happen (Skip to Question 6d) I primarily use it for immune tolerance (ITI or ITT) (the regular use of factor to treat or get rid of an inhibitor) (Skip to Question 6d) I do not use clotting factor concentrate (Skip to Question 6d) 6c. If you use factor primarily to prevent bleeds, do you use it on a regular schedule, all year long (continuous prophylaxis)? No Do not know 7. Have you ever received a hepatitis A shot? Hepatitis A (HAV) is a virus that can cause liver disease. It is usually spread by contaminated food. However, vaccination against HAV is recommended for persons with bleeding disorders. A vaccine has been available since No Do not know 8. Have you ever received a hepatitis B shot (sometimes called Hep B)? A vaccine for hepatitis B virus has been available since 1991 and is recommended for newborns, adolescents, and persons with bleeding disorders. No Do not know 6d. Some treatment products are given by injection into a vein (intravenously). This process is called infusion. If you take treatment products intravenously, are you able to have infusions at home? No I do not use intravenous treatment products (Skip to Question 7) 6e. If you do infusions at home, who performs the infusions? Check all that apply: I do A family member does A healthcare provider does Someone else does 2013 Hemophilia Federation of America. All rights reserved. 5 NOT FOR DISTRIBUTION. DO NOT COPY.

6 CHOICE Survey BLEEDS 9. Have you ever had a bleed? No (Skip to Question 16) 10. Have you ever had an intracranial bleed (ICH)? An intracranial bleed is one that occurs inside the skull, in or around the brain. No 11. Have you ever had a joint bleed? A joint bleed is one that occurs in the enclosed space between two or more bones, such as the hip, knee, ankle, shoulder, elbow, or wrist. No (Skip to Question 15) 11a. If yes, have you had any joint bleeds in the last 12 months? - about how many? No 14. Because of your bleeding disorder, have you ever had a joint fusion? In a joint fusion, surgery is used to make the bones of a joint permanently fuse together. Joint fusion is used to reduce pain in a badly damaged joint and make the joint more stable. Joint fusion may be called arthrodesis (arthro-dee-sis). No Not sure 15. In the last 12 months, have you had any bleeds other than in a joint? No (Skip to Question 16) 15a. If yes, in the last 12 months, where did you experience bleeds other than in a joint? Check all that apply and note how many: Muscle - about how many? Mouth or nose - about how many? Other (please tell where) about how many? 12. Because of your bleeding disorder, have you ever had a synovectomy (sin-o-vek-tah-me)? A synovectomy is a procedure to remove the tissue that lines a joint when it becomes inflamed and causes damage. A synovectomy may be done by surgery or by injection of a chemical or radioactive substance into the joint. It is not the same as an injection of cortisone (steroids). Synovectomy may also be called villusectomy. No Not sure 13. Because of your bleeding disorder, have you ever had joint replacement surgery? In joint replacement surgery, a damaged joint is removed and replaced by a new, man-made joint. No Not sure 2013 Hemophilia Federation of America. All rights reserved. 6 NOT FOR DISTRIBUTION. DO NOT COPY.

7 CHOICE Survey COMPLICATIONS 16. Have you ever been tested for an inhibitor? An inhibitor is a substance (antibody) produced by the body that prevents bleeding disorders treatments from working. No (Skip to Question 16b) Do not know (Skip to Question 16b) 16a. If yes, when were you most recently tested for an inhibitor? Within the past 12 months More than a year ago Do not know 16b. Have you ever been told you had an inhibitor? No (Skip to Question 17) Do not know (Skip to Question 17) 16c. Do you currently have an inhibitor? No Do not know 17. Have you ever been told by a doctor or other health professional that you had HIV infection? HIV (Human Immunodeficiency Virus) is the virus that causes AIDS. Before the mid-1980s, many people with bleeding disorders were exposed to this virus. No Do not know 18. Have you ever been told by a doctor or other health care professional that you had viral hepatitis, sometimes called serum hepatitis? Hepatitis is swelling and inflammation of the liver. Viruses cause some types of hepatitis. Before the late 1980s, many people with bleeding disorders were exposed to viruses that can cause hepatitis. No (Skip to Question 19) Do not know (Skip to Question 19) 18a. If yes, what type(s)? Check all that apply: Hepatitis B (HBV) Hepatitis C (HCV) Other form(s) of hepatitis Do not know 18b. If yes, have you undergone any treatment to eradicate the virus? No Do not know 18c. Since getting this diagnosis, have you been told by a healthcare provider that you no longer have the virus? No Currently undergoing treatment or too soon to tell if treatment was successful Do not know 2013 Hemophilia Federation of America. All rights reserved. 7 NOT FOR DISTRIBUTION. DO NOT COPY.

8 CHOICE Survey QUALITY OF LIFE 19. How many days in the last 12 months have you missed work, school, or your usual activities because of your bleeding disorder? Note how many or check other option: Days Do not know/cannot remember 20. How often do you have pain, stiffness, loss of motion, or weakness in your joints due to your bleeding disorder? Every day Most days Some days Rarely Never (Skip to Question 22) 21. How often does pain, stiffness, loss of motion, or weakness in your joints limit your daily activities? Every day Most days Some days Rarely Never (Skip to Question 22) 21a. Check the statement which best describes your overall activity level today. Self-care activities are physical activities performed in caring for yourself, including activities such as dressing, bathing, and eating. Unlimited school or work and recreational activity levels Unlimited school or work activity levels with limited recreational activity levels Limited school or work and recreational activity levels Limited school or work, recreational, and selfcare activity levels Require assistance from another person for school or work and self-care activity and unable to participate in recreation 22. About how often do you use over-the-counter pain medication for pain related to your bleeding disorder? Over-the-counter medications are those that can be purchased without a prescription from a healthcare provider. Every day Most days Some days Rarely Never 23. About how often do you use prescription pain medication for pain related to your bleeding disorder? Prescription pain medications are those that can be purchased only with a prescription from a healthcare provider. Every day Most days Some days Rarely Never 2013 Hemophilia Federation of America. All rights reserved. 8 NOT FOR DISTRIBUTION. DO NOT COPY.

9 CHOICE Survey OTHER MEDICAL CONDITIONS 24. Has a doctor or other healthcare provider ever told you that you had any of the following conditions? Check all that apply: Anemia, tired blood or low blood Anxiety Depression Post-Traumatic Stress Disorder (PTSD) Coronary (KOR-o-nair-ee) heart disease or angina (an-gi-na) (also called angina pectoris) A heart attack, MI or myocardial infarction (my-o-kar-dee-al in-fark-shun) Deep vein thrombosis (throm-bo-sis) or DVT (a blood clot in a deep vein) Pulmonary embolism (PUL-mun-ary EM-bo-lizm) or PE (a blood clot in the lung) Diabetes (DI-a-BEE-tez) or sugar diabetes (other than when pregnant) High cholesterol (ko-les-te-rol) High blood pressure or hypertension Liver disease Osteoporosis (os-tee-o-puh-roh-sis), thin bones or brittle bones Stroke that was not due to bleeding Thyroid (THI-royd) disease Weak or failing kidneys If yes, have you ever had dialysis (di-al-i-sis), either peritoneal (PER-i-to- NE-al) or hemodialysis (HE-mo-di-AL-i-sis)? Cancer (if checked, please complete next page) 2013 Hemophilia Federation of America. All rights reserved. 9 NOT FOR DISTRIBUTION. DO NOT COPY.

10 CHOICE Survey If you checked Cancer above, please check all types of cancer that apply: Bladder Blood (other than leukemia) Bone Brain Breast Cervix (SUR-viks) Colon (KO-lon) Esophagus (e-sof-ah-gus) Gallbladder (GAWL-blad-der) Hepatocellular carcinoma (heh- PAT-o-sel-yu-lar KAR-sin-O-ma) or HCC Kidney Larynx (LAR-inks) (voice box) or windpipe Leukemia (LU-ke-me-a) Liver (other than hepatocellular carcinoma) Lung Lymphoma (lim-fo-ma) Melanoma (MEL-a-NO-ma) Mouth/tongue/lip Ovary (O-vah-ree) Pancreas (PAN-kree-as) Prostate (PROS-tate) Rectum Skin (other than melanoma) Soft tissue (muscle or fat) Stomach Testis Throat or pharynx (FAR-inks) Thyroid (THI-royd) Uterus (womb) Other Do not know 2013 Hemophilia Federation of America. All rights reserved. 10 NOT FOR DISTRIBUTION. DO NOT COPY.

11 CHOICE Survey MEDICAL CARE 25. Do you see a health care professional regularly for care of your bleeding disorder? (Skip to Question 26) No 25a. If no, why not? Check all that apply: Do not need to seek care regularly Do not know where to get care There are no health care professionals who treat bleeding disorders in my area Available health care professionals will not treat me for my bleeding disorder Do not like available health care professionals Too expensive/cannot afford care or services Cannot find a provider that accepts my insurance Transportation problems Clinic/office hours are inconvenient Healthcare professionals do not speak my language Other (please describe): 26. Are there one or more doctors or other health professionals that you usually see for your bleeding disorder? No (Skip to Question 27) 26a.If yes, what sort of health professionals are these? Check all that apply: Family practitioner/general practitioner/internist Hematologist (Blood doctor) Obstetrician/Gynecologist (OB/GYN) Oncologist (Cancer doctor) Orthopedist/Orthopedic surgeon (Bone and Muscle doctor) Pediatrician (Children s doctor) ENT (Ear, nose and throat doctor; Otolaryngologist, Otorhinolaryngologist) Nurse/Nurse practitioner/physician assistant Physical therapist Social worker Other (please describe): Do not know 2013 Hemophilia Federation of America. All rights reserved. 11 NOT FOR DISTRIBUTION. DO NOT COPY.

12 CHOICE Survey 27. About how often do you see a health care professional about your bleeding disorder? At least once a year At least once every 2-3 years At least once every 4 or more years Only prior to a medical procedure that will cause me to bleed 28. When did you last see a doctor or other health care professional about your bleeding disorder? Within the past year 1-2 years ago 3-4 years ago More than 4 years ago Never 29. Have you ever received care or services for your bleeding disorder at a hemophilia treatment center (HTC)? HTCs provide comprehensive care to individuals with bleeding disorders and their families. HTCs bring together a team of doctors, nurses, physical therapists, and other health professionals experienced in treating people with bleeding disorders. HTCs are located in most but not all states. No (Skip to Question 29d) Not sure (Skip to Question 29d) 29a. If yes, please see the list in Attachment A and write the number of the HTC at which you received care or services in the space below. For example, Backus Children's Hospital is b. If the HTC where you received care or service does not appear in Attachment A, please provide the doctor s name and city and state where you last received care or services for your bleeding disorder. By providing this information we can determine if you received treatment at a federally funded hemophilia treatment center. Doctor s Name: City: State: Prefer not to answer Not sure/do not know 29c. If yes, how long has it been since you last received care or services for your bleeding disorder at a hemophilia treatment center? Within the past year (Skip to Question 30) 1-2 years ago (Skip to Question 30) 3-4 years ago (Skip to Question 30) More than 4 years ago (Skip to Question 30) 29d. If no or not sure, please see the list of places in Attachment A. If you have received care or services at any of these places, please write the number of the place at which you received care or services in the space below. For example, Backus Children's Hospital is e. If you have not received care or services at any of the places in Attachment A, please provide the doctor s name and city and state where you last received care or services for your bleeding disorder. By providing this information we can determine if you received treatment at a federally funded hemophilia treatment center. Doctor s Name: City: State: Prefer not to answer Not sure/do not know 2013 Hemophilia Federation of America. All rights reserved. 12 NOT FOR DISTRIBUTION. DO NOT COPY.

13 CHOICE Survey 30. Where do you usually go for care of your bleeding disorder? Clinic or community health center Doctor s office Hospital emergency room Hospital outpatient department Hemophilia Treatment Center (HTC) Non-hospital urgent care Do not usually go to any one place Do not know Some other place Please describe: 31. In the last 12 months, have you delayed or done without care for your bleeding disorder? No (Skip to Question 32) 31a. If yes, why? Check all that apply: Too expensive/cannot afford care There are no health care professionals who treat bleeding disorders in my area Cannot find a provider that accepts my insurance Transportation problems Concerns about using medication Do not know how to infuse (give medication by injection into a vein) Do not need to seek care Other (please describe): 32a. If yes, in the last 12 months about how many times have you gone to a hospital emergency room due to your bleeding disorder or a complication of your bleeding disorder? Note how many or check other option: Total number of visits Do not know/do not recall 33. In the last 12 months, have you been admitted to a hospital as an inpatient overnight due to your bleeding disorder or a complication of your bleeding disorder? No (Skip to Question 34) 33a. If yes, then in the last 12 months, about how many times have you been admitted to a hospital as an inpatient overnight due to your bleeding disorder or a complication of your bleeding disorder? Note how many or check other option: Total number of admissions Do not know/do not recall 33b. In the last 12 months, about how many nights total have you spent as an inpatient due to your bleeding disorder or a complication of your bleeding disorder? Note how many or check other option: Total number of admissions Do not know/do not recall 32. In the last 12 months, have you gone to a hospital emergency room due to your bleeding disorder or a complication of your bleeding disorder? No (Skip to Question 33) 2013 Hemophilia Federation of America. All rights reserved. 13 NOT FOR DISTRIBUTION. DO NOT COPY.

14 CHOICE Survey DEMOGRAPHIC INFORMATION 34. Are you of Hispanic or Latino origin or descent?, Hispanic or Latino No, not of Hispanic or Latino origin or descent Do not know/prefer not to answer 35. Which one or more of the following would you say is your race? Check one or more: American Indian/Alaska Native Asian Black or African American Native Hawaiian or Other Pacific Islander White Other (please write what you consider your race to be): Do not know/prefer not to answer 36. In what country were you born? USA Other than USA (please write name of country): Prefer not to answer 37. What are the first three digits or letters of the ZIP code or postal code where you live? Please enter the first three digits or letters of your zip code (postal code) or check other option. For example, if your zip code is 12345, enter 123. First three digits or letters of zip or postal code Prefer not to answer 38. What was your total household income last year? Your household includes everyone who lives in your house or apartment. Include income from all members of the household, including students and members of the military who are temporarily away from the home. Less than $25,000 $25,000- $49,999 $50,000- $74,999 $75,000- $99,999 $100,000 or more Prefer not to answer 39. How many people are in your household? Your household includes everyone who lives in your house or apartment. Note how many or check other option: Number of people in household Prefer not to answer 40. What is the highest grade or level of school that you have completed? 8th grade or less Some high school, but did not graduate High school graduate or GED Vocational/Technical school Some college or 2-year degree 4-year college graduate More than 4-year college degree (Master s degree, PhD, MD, JD, etc.) Other, please describe: Prefer not to answer 2013 Hemophilia Federation of America. All rights reserved. 14 NOT FOR DISTRIBUTION. DO NOT COPY.

15 CHOICE Survey 41. What is your current employment status? Check all that apply: Employed full-time Employed part-time Able, but not currently working Student Homemaker Permanently disabled Retired Other Prefer not to answer 43. How much do you weigh? Note how much or check other option: pounds Do not know Prefer not to answer 44. How tall are you? Note how tall or check other option: feet inches Do not know Prefer not to answer 42. Do you have health insurance? No (Skip to 43) Prefer not to answer (Skip to 43) 42a. If yes, what kind of health insurance do you currently have? Check all that apply: Medicaid Medicare Commercial or private insurance (includes health insurance obtained through a current or former employer or union) State-sponsored health plan (includes state children s health insurance programs and high-risk pool) Military Health Care (TRICARE/VA/Champ- VA) Indian Health Service Other (please describe): Prefer not to answer 2013 Hemophilia Federation of America. All rights reserved. 15 NOT FOR DISTRIBUTION. DO NOT COPY.

16 CHOICE Survey QUALITY OF CARE The following list includes some things people say about medical care for their bleeding disorders. Please read each item carefully, keeping in mind the medical care you are receiving now for your bleeding disorder. (If you have not received care recently, think about what you would expect if you needed care today.) 45. How strongly do you AGREE or DISAGREE with each of the following statements? Doctors are good about explaining the reason for medical tests.. Strongly Strongly Agree Agree Uncertain Disagree Disagree I think my doctor s office has everything needed to provide complete medical care The medical care I have been receiving is just about perfect. Sometimes doctors make me wonder if their diagnosis is correct I feel confident that I can get the medical care I need without being set back financially. When I go for medical care, they are careful to check everything when treating or examining me I have to pay more for my medical care than I can afford I have easy access to the medical specialists I need Where I get medical care, people have to wait too long for emergency treatment Doctors act too business like and impersonal toward me. My doctors treat me in a very friendly and courteous manner.. Those who provide my medical care sometimes hurry too much when they treat me Doctors sometimes ignore what I tell them I have some doubts about the ability of the doctors who treat me Doctors usually spend plenty of time with me I find it hard to get an appointment for medical care right away.. I am dissatisfied with some things about the medical care I receive I am able to get medical care whenever I need it Hemophilia Federation of America. All rights reserved. 16 NOT FOR DISTRIBUTION. DO NOT COPY.

17 CHOICE Survey Thank you for participating in the CHOICE Project. We sincerely appreciate your time. Please return this survey in the prepaid return envelope provided. If you have misplaced the prepaid envelope, please contact HFA for a replacement at: choice@hemophiliafed.org Otherwise, please mail the survey to: Hemophilia Federation of America 210 7th St SE, Suite 200 B Washington DC The results of this paper survey will be entered into our secure, electronic database. This survey and the mailing envelope will be destroyed to protect your identity. THANK YOU! 2013 Hemophilia Federation of America. All rights reserved. 17 NOT FOR DISTRIBUTION. DO NOT COPY.

18 CHOICE Survey: Attachment A ALABAMA 1 University of Alabama Birmingham Medical Center Birmingham, AL 2 Children's Rehabilitation Services Birmingham, Huntsville, Mobile or Opelika, AL ALASKA 3 Alaska Hemophilia Program Anchorage, AK 4 Bleeding Disorder Center of Alaska Providence Alaska Medical Center Anchorage, AK ARIZONA 5 Arizona Hemophilia and Thrombosis Center Phoenix Children's Hospital Phoenix, AZ 6 Arizona Hemophilia and Thrombosis Center (may be known as Mountain States Regional Hemophilia Center-Tucson) University of Arizona Health Sciences Center Tucson, AZ ARKANSAS 7 Arkansas Center for Bleeding Disorders (may be known as Hemophilia Center of Arkansas) Arkansas Children's Hospital Little Rock, AR 2013 Hemophilia Federation of America. All rights reserved. 1 NOT FOR DISTRIBUTION. DO NOT COPY.

19 CHOICE Survey: Attachment A CALIFORNIA 8 Alta Bates Medical Center Berkeley, CA 9 Hemophilia Treatment Center City of Hope National Medical Center Duarte, CA 10 Children s Hospital Los Angeles Los Angeles, CA 11 Hemophilia Program Orthopaedic Hospital of Los Angeles Los Angeles, CA 12 Valley Children's Hospital Children's Hospital of Central California Madera, CA 13 Children's Hospital Oakland Oakland, CA 14 Center for Comprehensive Care and Diagnosis of Inherited Blood Disorders Children's Hospital of Orange County Orange, CA 15 Stanford University Medical Center (may be known as Lucile Salter Packard Children s Hospital at Stanford) Palo Alto, CA 16 Hemophilia Program University of California at Davis Sacramento, CA 17 Rady Children's Hospital San Diego San Diego, CA 18 UCSF Hemophilia Program University of California, San Francisco San Francisco, CA 2013 Hemophilia Federation of America. All rights reserved. 2 NOT FOR DISTRIBUTION. DO NOT COPY.

20 CHOICE Survey: Attachment A COLORADO 19 University of Colorado Hemophilia and Thrombosis Center (may be known as Mountain States Regional Hemophilia and Thrombosis Center- Colorado) University of Colorado Denver Aurora (or Denver), CO CONNECTICUT 20 UCONN Hemophilia Treatment Center University of Connecticut Health Center Farmington, CT 21 Yale University School of Medicine New Haven, CT DELAWARE 22 Hemophilia Program Christiana Care Health Services Newark, DE DISTRICT OF COLUMBIA 23 Children's National Medical Center Washington, DC 24 Lombardi Comprehensive Cancer Center Georgetown University Medical Center Washington, DC 2013 Hemophilia Federation of America. All rights reserved. 3 NOT FOR DISTRIBUTION. DO NOT COPY.

21 CHOICE Survey: Attachment A FLORIDA 25 University of Florida Gainesville, FL 26 Nemours Children's Clinic Division of Pediatric Hematology/Oncology Jacksonville, FL 27 Miami Comprehensive Hemophilia Center Miami, FL 28 All Children's Hospital Hemophilia Treatment Center St. Petersburg, FL 29 St. Joseph's Children's Hospital Tampa, FL 30 University of South Florida Tampa, FL GEORGIA 31 Children s Healthcare of Atlanta at Scottish Rite (may be known as Scottish Rite Children's Medical Center) Atlanta, GA 32 Emory University Hemophilia Program Atlanta, GA 33 Georgia Regents University Hemophilia Treatment Center (may be known as Medical College of Georgia) Augusta, GA 34 Backus Children's Hospital Savannah, GA GUAM 35 Guam Comprehensive Hemophilia Care Program Department of Public Health & Social Services Mangilao, GU 2013 Hemophilia Federation of America. All rights reserved. 4 NOT FOR DISTRIBUTION. DO NOT COPY.

22 CHOICE Survey: Attachment A HAWAII 36 Hemophilia and Thrombosis Center of Hawaii Kapi'olani Medical Center for Women and Children Honolulu, HI IDAHO 37 Idaho Regional Hemophilia Center Mountain States Tumor Institute Boise, ID ILLINOIS 38 Ann & Robert H. Lurie Children's Hospital of Chicago (may be known as Children's Memorial Hospital) Chicago, IL 39 Hemophilia Treatment Centers John H. Stroger, Jr. Hospital of Cook County (may be known as Cook County Hospital) Chicago, IL 40 Northwestern Center for Bleeding Disorders Northwestern University Chicago, IL 41 Michael Reese Hospital Chicago, IL 42 Rush University Medical Center Chicago, IL 43 Bleeding & Clotting Disorders Institute, Peoria, IL 44 Comprehensive Bleeding Disorders Center, Peoria, IL INDIANA 45 Indiana Hemophilia and Thrombosis Center Indianapolis, IN IOWA 46 Iowa Regional Hemophilia Center University of Iowa Hospitals & Clinics Iowa City, IA 2013 Hemophilia Federation of America. All rights reserved. 5 NOT FOR DISTRIBUTION. DO NOT COPY.

23 CHOICE Survey: Attachment A KENTUCKY 47 University of Kentucky Hemophilia Treatment Center Lexington, KY 48 Norton Kosair Children's Medical Center Louisville, KY 49 Hemophilia Treatment Center Brown Cancer Center Louisville, KY LOUISIANA 50 Louisiana Center for Bleeding and Clotting Disorders (may be known as Louisiana Comprehensive Hemophilia Care Center) Tulane University Health Science Center New Orleans, LA MAINE 51 Maine Hemophilia & Thrombosis Center Maine Medical Center Scarborough, ME MARYLAND 52 Johns Hopkins University Medical Center Baltimore, MD 53 St. Agnes Hospital Baltimore, MD 2013 Hemophilia Federation of America. All rights reserved. 6 NOT FOR DISTRIBUTION. DO NOT COPY.

24 CHOICE Survey: Attachment A MASSACHUSETS 54 Boston Hemophilia Center Boston Children's Hospital Boston, MA 55 Boston Hemophilia Center- Brigham and Women's Brigham and Women's Hospital Boston, MA 56 Massachusetts General Hospital Pediatric Hematology/Oncology Boston, MA 57 New England Hemophilia Center Worcester, MA 2013 Hemophilia Federation of America. All rights reserved. 7 NOT FOR DISTRIBUTION. DO NOT COPY.

25 CHOICE Survey: Attachment A MICHIGAN 58 University of Michigan Hemophilia and Coagulation Disorders Program (may be known as University of Michigan Hemophilia Treatment Center) Ann Arbor, MI 59 DMC Karmonas Cancer Institute Center for Bleeding Disorders and Thrombosis Detroit Receiving Hospital Detroit, MI 60 Hemostasis and Thrombosis Center Children's Hospital of Michigan Detroit, MI 61 Henry Ford Hospital Adult Hemophilia and Thrombosis Treatment Center Henry Ford Hospital Detroit, MI 62 Michigan State University Center for Bleeding Disorders & Clotting Disorders (may be known as Michigan State University Comprehensive Center for Bleeding Disorders) East Lansing, MI 63 Eastern Michigan Hemophilia Treatment Center Hurley Medical Center Flint, MI 64 DeVos Children s Coagulation Disorders Program DeVos Children's Hospital Grand Rapids, MI 65 West Michigan Pediatric at Bronson MSU/KCMS Clinic Kalamazoo, MI 66 Hemophilia Clinic of West Michigan Cancer Center Kalamazoo, MI 67 Munson Medical Center Northern Regional Bleeding Disorder Center Munson Medical Center Traverse City, MI 2013 Hemophilia Federation of America. All rights reserved. 8 NOT FOR DISTRIBUTION. DO NOT COPY.

26 CHOICE Survey: Attachment A MINNESOTA 68 Children's Hospitals & Clinics of Minnesota Minneapolis, MN 69 Center for Bleeding and Clotting Disorders (may be known as Fairview University Hemophilia and Thrombosis Center) University of Minnesota Medical Center, Fairview Minneapolis, MN 70 Mayo Comprehensive Hemophilia Center Mayo Clinic Rochester, MN MISSISSIPPI 71 Clinic for Bleeding and Clotting Disorders University of Mississippi Medical Center Jackson, MS MISSOURI 72 Missouri Hemophilia Treatment Center University of Missouri Health Care (may be known as University of Missouri Hospitals and Clinics) Columbia, MO 73 Kansas City Regional Hemophilia Center The Children's Mercy Hospital Kansas City, MO 74 The John D. Bouhasin, M.D. Center for Children with Bleeding Disorders SSM Cardinal Glennon Children's Medical Center St. Louis, MO 75 Center for Bleeding and Thrombotic Disorders and Adult Hemophilia Treatment Center Saint Louis University St. Louis, MO 76 Washington University Center for Bleeding and Blood Clotting Disorders St Louis, MO 2013 Hemophilia Federation of America. All rights reserved. 9 NOT FOR DISTRIBUTION. DO NOT COPY.

27 CHOICE Survey: Attachment A NEBRASKA 77 Nebraska Regional Hemophilia Treatment Center University of Nebraska Medical Center Omaha, NE NEVADA 78 Hemophilia Treatment Center of Nevada Children's Center for Cancer and Blood Diseases Las Vegas, NV 79 Hemophilia and Thrombosis Center of Nevada Las Vegas, NV 80 Hemophilia Treatment Center of Las Vegas Las Vegas, NV NEW HAMPSHIRE 81 Dartmouth-Hitchcock Hemophilia Center Lebanon, NH NEW JERSEY 82 New Jersey Regional Hemophilia Program UMDNJ-Robert Wood Johnson University Hospital New Brunswick, NJ 83 Nadeene Brunini Comprehensive Hemophilia Care Center (may be known as St. Michael s Comprehensive Hemophilia Care Center) St. Michael's Medical Center Newark, NJ 84 Comprehensive Hemophilia Treatment Center Newark Beth Israel Medical Center Newark, NJ 85 Children's Hospital of Philadelphia Specialty Center New Jersey Section of Hematology/Oncology Voorhees, NJ 2013 Hemophilia Federation of America. All rights reserved. 10 NOT FOR DISTRIBUTION. DO NOT COPY.

28 CHOICE Survey: Attachment A NEW MEXICO 86 Ted R. Montoya Hemophilia Center Albuquerque, NM NEW YORK 87 The Regional Comprehensive Hemophilia & von Willebrand Treatment Center Albany Medical College Albany, NY 88 Hemophilia Center of Western New York Buffalo, NY 89 UHSH Blood Disorder Center UHS Wilson Hospital Johnson City, NY 90 Hemophilia Treatment Center Long Island Jewish Medical Center New Hyde Park, NY 91 Medical Center Regional Comprehensive Hemophilia Treatment Center Mount Sinai School of Medicine New York, NY 92 Regional Comprehensive Hemophilia Diagnostic and Treatment Center Weill-Cornell Medical Center/New York-Presbyterian Hospital New York, NY 93 Mary M. Gooley Hemophilia Center, Inc. Rochester, NY 94 SUNY Upstate Medical University-Adult Program (may be known as SUNY Health Science Center or University Hospital Center) Syracuse, NY 95 Center for Children with Cancer & Blood Disorder SUNY Upstate Medical University (may be known as SUNY Health Science Center) (may be known as University Hospital Center) Syracuse, NY 2013 Hemophilia Federation of America. All rights reserved. 11 NOT FOR DISTRIBUTION. DO NOT COPY.

29 CHOICE Survey: Attachment A NORTH CAROLINA 96 Harold R. Roberts Comprehensive Hemophilia Diagnostic and Treatment Center University of North Carolina at Chapel Hill Chapel Hill, NC 97 The Brody School of Medicine East Carolina University Greenville, NC 98 Wake Forest University School of Medicine Winston-Salem, NC NORTH DAKOTA 99 Hemophilia & Thrombosis Treatment Center MeritCare Hospital DBA Roger Maris Cancer Center Fargo, ND 2013 Hemophilia Federation of America. All rights reserved. 12 NOT FOR DISTRIBUTION. DO NOT COPY.

30 CHOICE Survey: Attachment A OHIO 100 Akron Children's Hemostasis and Thrombosis Center (may be known as Hemophilia Treatment Center) Akron Children's Hospital (may be known as Akron Children s Hospital Medical Center) Akron, OH 101 Hemophilia Treatment Center Cincinnati Children's Hospital Medical Center Cincinnati, OH 102 Forum Health Youngstown Hemophilia Center Cincinnati, OH 103 Hemophilia Treatment Center University of Cincinnati Medical Center Cincinnati, OH 104 Hemophilia Treatment Center University Hospitals of Cleveland (may be known as CWRU Hospitals) Cleveland, OH 105 Hemophilia Treatment Center Ohio State University Medical Center Columbus, OH 106 Nationwide Children's Hospital Hemostasis and Thrombosis Center (may be known as Columbus Children's Hospital) Columbus, OH 107 West Central Ohio Hemophilia Treatment Center Dayton Children's Medical Center Dayton, OH 108 Northwest Ohio Hemophilia Treatment Center The Toledo Hospital/Children's Medical Center Toledo, OH OKLAHOMA 109 Oklahoma Center for Bleeding and Clotting Disorders (may be known as Oklahoma Comprehensive Hemophilia Treatment Center) Oklahoma City, OK 2013 Hemophilia Federation of America. All rights reserved. 13 NOT FOR DISTRIBUTION. DO NOT COPY.

31 CHOICE Survey: Attachment A OREGON 110 The Hemophilia Center at Oregon Health & Science University (may be known as Oregon Hemophilia Treatment Center) Portland, OR PENNSYLVANIA 111 Hemophilia Treatment Center Lehigh Valley Hospital-Muhlenberg Bethlehem, PA 112 Hemophilia and Thrombosis Center of Central Pennsylvania The Milton S. Hershey Medical Center Hershey, PA 113 Cardeza Foundation Hemophilia Center Philadelphia, PA 114 Hemophilia Program Children's Hospital of Philadelphia Philadelphia, PA 115 Penn Hemophilia and Thrombosis Program Hospital of the University of Pennsylvania Philadelphia, PA 116 Hemophilia Center of Western Pennsylvania Pittsburgh, PA PUERTO RICO 117 Puerto Rico Hemophilia Treatment Center University of Puerto Rico School of Medicine San Juan, PR RHODE ISLAND 118 Hemophilia Center of Rhode Island Rhode Island Hospital Providence, RI 2013 Hemophilia Federation of America. All rights reserved. 14 NOT FOR DISTRIBUTION. DO NOT COPY.

32 CHOICE Survey: Attachment A SOUTH CAROLINA 119 Hemophilia Center of South Carolina Palmetto Health Richland (may be known as Children s Hospital of Palmetto-Richland Memorial or Children s Hospital of Richland Memorial) Columbia, SC SOUTH DAKOTA 120 South Dakota Center for Blood Disorders Sanford Children's Specialty Clinic (may be known as South Dakota Children s Specialty Clinics) Sioux Falls, SD TENNESSEE 121 East Tennessee Comprehensive Hemophilia Center Knoxville, TN 122 Hemophilia Clinic of Memphis University of Tennessee Memphis Memphis, TN 123 St. Jude Children's Research Hospital Memphis, TN 124 Hemostasis Clinic Vanderbilt University Medical Center Nashville, TN 2013 Hemophilia Federation of America. All rights reserved. 15 NOT FOR DISTRIBUTION. DO NOT COPY.

33 CHOICE Survey: Attachment A TEXAS 125 North Texas Comprehensive Hemophilia Center University of Texas Southwestern Medical School Dallas, TX 126 North Texas Hemophilia and Thrombosis Program-Pediatric Program Children's Medical Center Dallas, TX 127 Fort Worth Comprehensive Hemophilia Center Cook Children's Medical Center Ft. Worth, TX 128 Gulf States Hemophilia and Thrombophilia Center (may be known as Gulf States Hemophilia Center) Houston, TX 129 Texas Children's Hemophilia and Thrombosis Center Houston, TX 130 South Texas Comprehensive Hemophilia Center Christus Santa Rosa Children's Hospital San Antonio, TX UTAH 131 Intermountain Hemophilia and Thrombosis Center (may be known as Mountain States Regional Hemophilia Center- Utah) Salt Lake City, UT VERMONT 132 Vermont Regional Hemophilia Center Fletcher Allen Hospital Burlington, VT 2013 Hemophilia Federation of America. All rights reserved. 16 NOT FOR DISTRIBUTION. DO NOT COPY.

34 CHOICE Survey: Attachment A VIRGINIA 133 University of Virginia Hospital Charlottesville, VA 134 Bleeding Disorders Center of Hampton Roads Children's Hospital of the King's Daughters Norfolk, VA 135 Virginia Commonwealth University Medical College of Virginia Hospital Richmond, VA WASHINGTON 136 Puget Sound Blood Center & Program Seattle, WA 137 Seattle Children's Hospital Seattle, WA 138 Providence Sacred Heart Children's Hospital Spokane, WA WEST VIRGINIA 139 Charleston Area Medical Center Charleston, WV 140 West Virginia University Medical Center Morgantown, WV WISCONSIN 141 Hemophilia Outreach Center Green Bay, WI 142 Gundersen Clinic LaCrosse, WI 143 UWHC Comprehensive Program for Bleeding Disorders (may be known as American Red Cross Badger Center for Bleeding Disorders) University of Wisconsin Hospital and Clinics Madison, WI 144 Comprehensive Center for Bleeding Disorders Children's Hospital of Wisconsin Milwaukee, WI 2013 Hemophilia Federation of America. All rights reserved. 17 NOT FOR DISTRIBUTION. DO NOT COPY.