1. OneMatch Stem Cell and Marrow Network Volunteer Initial Training v.2013-01-23

2. Learning Objectives OneMatch Information Frequently Asked Questions Awareness Event Who is the “ideal” donor to be a donor and why Consent to Participate process How to collect and pack buccal swab samples Importance of Confidentiality and Privacy

3. What is OneMatch all about? OneMatch is a Canadian Program that matches and coordinates the collection of stems from potential donors to help save the lives of patients any where in the world who need a stem cell transplant. Recruits and maintains the Canadian database of potential stem cell donors.

4. What are stem cells Immature cells that can become: Red blood cells (carry oxygen) White blood cells (fight infection) Platelets (help to stop bleeding) Stem cells can be collected from bone marrow, from our circulating blood (also known as peripheral blood) and umbilical cord blood.

5. How are stem cells donated – Stimulated Peripheral Blood Stem Cell Donation Stem cells in your circulating blood (peripheral blood) are collected using a procedure called apheresis In most cases, donor is given injections days prior to collection to stimulate growth of stem cells. Blood is drawn through a needle. The stem cells are separated from the rest of your blood, and remaining blood is returned back into your body through another needle.

6. How are stem cells donated – Stimulated Peripheral Blood Stem Cell Donation Blood is drawn through a needle. The stem cells are separated from the rest of your blood Remaining blood is returned back into your body through another needle

7. How are stem cells donated – Bone Marrow Stem Cell Donation Surgical procedure performed under anesthesia. Special needle is use to withdraw liquid marrow from the back of your pelvic bones After donation, you’ll likely feel some soreness where the needle was inserted. Donors describe it as being sore after hard exercise or a fall on the ice.

8. Bone Marrow Stem Cell Collection

9. How are stem cells donated – Umbilical Cord Blood Blood from a baby’s cord is collected after the child has been born. Umbilical cord blood is then stored using a technique called cryopreservation (freezing the stem cells until they are to be used)

10. What diseases are treated with stem cell transplants? Variety of diseases and disorders including blood-related diseases such as: Leukemia Aplastic Anemia Inherited immune system and metabolic disorders

11. What do you mean by a “match”? Our immune system is responsible for removing things that do not belong (e.g. infections). To identify what does not belong in our system we have markers that are as unique as our fingerprints. These genetic markers make up our Human Leukocyte Antigen (HLA) system. HLA genetic markers are located on the outside of our white blood cells (which help us fight diseases) We need to match the patient’s HLA markers to donate stem cells.

12. What do you mean by a “match”? HLA markers are inherited from your parents. Same parent siblings (Brothers and Sisters) have 25% chance of matching each other. When there is no family match, patients need to find an unrelated donor. Some HLA markers are only found within specific ethnic backgrounds such as people from the Aboriginal and Black communities..

13. Is there a matching donor for every patient who needs a transplant? Even with millions of donors on registries worldwide, a perfect stem cell match isn’t always available. Some patients can have uncommon HLA markers that may be very difficult to match.

14. How can we help find matches? Recruit: Males, 17-35, and Ethnically Diverse

15. Transplant Doctors want male donors! WHY? Males have higher cell counts which improves post-transplant engraftment and potentially reduces donation complications such as graft vs. host disease (GVHD). Studies show that female donors (with or without history of pregnancy) may increase risk of chronic GVHD in male patients. Ethnically diverse registry will increase the likelihood that patients of mixed or ethnic backgrounds will find matches easier.

16. Age Composition of OneMatch

17. 17 Ethnic Composition of OneMatch Database

18. Awareness Event Volunteer Roles

19. Awareness Event Roles Everyone’s Role Confidentiality Privacy Quality Control 1. Pre-screening and Education 2. Obtaining Informed Consent 3. Labelling and Buccal Swabbing 4. Event Reconciliation 5. Packing and Shipping

20. Pre-screening Age 17 to 50 (optimal 17-35) Good general health Will help all patients Provide a tissue typing sample using a buccal (cheek) swab. Valid Provincial Health Care Coverage Answer “no” to any question: Not eligible to register.

21. Other Ways to Help Blood Donation Stem Cell patients use many units of blood during treatments, as well before and after transplant Volunteering At OneMatch awareness events or blood donor clinics Financial Gifts Monetary donation to help build Canadian Blood Services programs. Call 1 888 2DONATE(1-888-236-6283) Visit website www.blood.ca

22. Informed Consent A person may state they may understand the of what they are consenting to, although they do not appreciate the impact of that action.

23. The Why’s to our Informed Consent It’s the LAW! (cannot be influenced unduly to provide consent) Reliable long-term committed donors Cost-effective (health care $/time) Please note: Someone may verbally agree to something from fear or perceived social pressure.

24. How do we ensure Informed Consent has been obtained? Ask: “What happens if you are a match?” “What are the risks involved in donating stem cells?” “What happens if you say no?” * Note: all answers to questions are located in the OneMatch Information for New Registrants pamphlet that should be given to all people who are registering.

25. Registration Forms

26. Personal Information and Health Screening Information printed clearly. If not, ask them to fix the area by printing the information clearly. Each question has been answered in corresponding box with a or and not with a line through all questions. All areas are filled out

27. Personal Information

28. Health Screening Each question must be answered with a or in the corresponding box.

29. Registration Forms

30. Consent to Participate Ensure Consent to Participate has been:  Read  Completed with signature/current date  Date format: YYYY-MM-DD

31. Consent to Participate Errors Common Not completed in pen. Fields on forms not completed. Written information not legible. Transposition errors - when two digits/characters have been reversed Drawing a line through health questions instead of answering each question.

32. Errors - Why do we care? Registrant is not able to be processed and must register or complete another buccal swab again Having to redo the registration and/or buccal swab delays processing and testing, which could result in the delay for a patient to find a matched donor.

33. Error Correction Draw a line through the error. Write your initials and the current date. Write the correction above the error. If an error occurs, you must:

34. Buccal Swabbing/Labelling Ask Again: “Have you read the consent section of the Registration Form and understand this is a long term commitment?” Prepare buccal swabs with labels IMPORTANT: Only work with one registrant at a time to avoid errors and maintain registrant’s privacy.

35. Barcode Labels The label sheet has 12 labels 4 labels are non-barcode labels 8 are barcode labels

36. Labelling Buccal Swabs (end of stick) Consent to Participate Form (office use only) Exterior buccal swab kit envelop.

37. Labelling Errors *When in doubt, start the collection from the beginning and discard old samples* Common Label not applied to Consent to Participate Labels are swapped between two different registrant swabs and/or paperwork

38. Need to use a new set of barcode labels? 1.Black out all old labels with permanent marker. 2.“Error correct” and black out any old labels on the paperwork and envelope.

39. Discarding Old Buccal Swabs 3.Place the completed swabs in the kit envelope, and seal closed 4.Write the reason for the use of the new labels. 5.Include old collection kit with new collection kit and registration paperwork

40. Buccal Swabbing Instruct registrant how to swab their cheeks. Remove one labelled swab at a time from sterile packaging. Cheek cells instead of saliva One cheek quadrant per swab Rub cheek harder than brushing teeth (20- 30 seconds)

41. Buccal Swabbing

42. Buccal Swabbing Errors Common Registrants not swabbing properly: Sucking Twirling Why do we care? Not enough check cells collected for the testing.

43. Buccal Swabbing Place used swab into buccal swab kit slot

44. Final Steps 1.Have registrant seal completed buccal swab kit into envelope. 2.Apply barcode label to back of sealed envelope (not over seal) 3.Attach paperwork, left over labels and then buccal swab kit sealed

45. Final Steps.. continued 4.Inform registrant: OneMatch may contact by telephone if there are any questions about their registration. “Welcome to the Network” letter. Update OneMatch with any changes to health and/or address. 5.Thank them for registering! Send the registrant to “Reconciliation”

46. Reconciliation Why do we have this role? To ensure quality assurance. Confirming paperwork and collection is complete and free from errors Registrations are traceable if collection kit is lost during transit

47. Registrant Data Log Information should be kept private at all times This information should be kept private from public view at all times during event First name 2 phone numbers If no number available, use email Enables us to contact registrants in the unlikely case a shipment is lost

48. Tracking Log Use barcode labels stapled to the package. Apply one label to appropriately “numbered field”.

49. Tracking Log: Signature Once 50 buccal swabs have been collected or at the end of their shift, sign off the tracking log. Note: Any numbered fields not used must have N/A indicated in the field.

50. Event Reconciliation Bundle Swab kits into 5s and place them in a box to be shipped End of the event, Count the number of tracking log sheets and number accordingly

51. Event Reconciliation: Summary Complete event details Record the tracking log page and the total number of non-barcode labels applied to the sheet.

52. Event Reconciliation: Kits Collected Write “end of record” after last log entry. Count number of buccal swabs collected and record in “Total Kits Collected’ field. Ensure number of labels used on tracking log(s) equals number of total kits collected. Sign off Event Reconciliation form.

53. 53 Shipping Policy WHY? To ensure security of shipments from awareness events All paperwork, packing and preparing boxes for shipment should be done at the awareness event. Note: When packing more than 1 event in 1 box, put each event in a separate bag

54. Packing Box 1.Box is free from previous labeling/markings 2.Place swab kits in Clear Plastic Bags 3.Complete Packing slip 4.Place Packing slip, tracking logs and event reconciliation form inside bag 5.Tie Bag 6.Tape box on top and bottom of seams with strong wide tape

55. Label Box Complete shipment labels Apply to side of shipment box.

56. Tamper-Proofing To ensure box was not opened during transit from your location to our location: Attach a Confidential sticker over Top and Bottom taped seams of each box

57. Prepare for Shipment Issue waybill Attach waybill to box(es) Avoid placing over other labels Retain physical or electronic copy of waybill Ship boxes using designated courier (e.g.: Fed Ex, UPS)

58. Notify OneMatch Email OneMatch staff who have been assigned to helping organize your event with the following information: Event name Event date (indicate all events) Waybill reference # # of Boxes (list which events are in each box for multiple events shipments) # of swabs Shipment origin

59. Send, Confirm and Destroy Fax/Scan and email Registrant Data Sheets to the Coordinator, Donor Management Confirm receipt from Coordinator, Donor Management Destroy and discard original Registrant Data Sheets

60. Volunteer Consent, Confidentiality Agreement and Privacy Protection

61. Volunteer Sign-in We are required by our accreditor (WMDA) to ensure all volunteers have been trained to our processes. By signing the Volunteer Training Record, you are acknowledging you were trained. We can then prove to our accreditor, we have trained our volunteers.

62. Confidentiality Protect Registrant’s privacy at all times! Concealed registrant information from public view Registrant contacts and health history must not be disclosed, discussed, or be taken advantage of. CBS ensures volunteers agree to these requirements by having you sign our confidentiality statements.

63. Confidentially Agreement

64. Volunteer Consent – Under 16 years old

65. Why is Privacy Important? It’s the LAW! Both the Federal and Provincial Governments have enacted legislation that protects the privacy rights of Canadians. The public want peace of mind knowing their personal information is not going to end up in the wrong hands and that they will not become a victim of identify theft.

66. Avoid Breaching the Privacy of Others Examples of Privacy Breaches Browsing the personal information of a family member or friend that is not required to perform your job role. Listening in on conversations regarding personal information that does not pertain to your job role. Somebody reading personal information that has been left open at the event.

67. If a Privacy Breach Occurs Breaches can be an honest mistake, however, you need to notify OneMatch immediately with the following details: People involved and their contact information Description of the privacy breach. Canadian Blood Services is obliged under law to inform its regulators or the privacy commissioners as well as the person(s) who is impacted by the breach.

68. Questions