Strategies for successful donor recruitment

Transcription

1 Datum Strategies for successful donor recruitment

2 Agenda 01 DKMS Development 02 Mission 03 Internationalization 04 Donor Recruitment Quantity Quality Retention Rate 05 Donor Management 06 Conclusion 2

3 1. DKMS Development DKMS History Founded 1991 by Peter Harf and Prof. Dr. Ehninger Only registered stem cell donors in Germany new donors after the first year 3

4 1. DKMS Development DKMS Today Largest donor center network worldwide newly registered donors worldwide in 2013 ( in 2014) More than 43,000 leukemia patients received a stem cell donation from a DKMS donor Delete Blood Cancer. New York/USA DKMS Polska, Warschau/Polen Fundacion DKMS Espana, Barcelona/Spain Delete Blood Cancer UK, London/England In 2013, 5,712 DKMS donors donated stem cells (3,031 in 2014) 4

5 1. DKMS Development More than 4,5 Mio. registered donors! Number of registered donors (total) DKMS Germany DKMS US DKMS Polska DKMS UK * 06/2014 More than 4,5 Mio active in Registry source: DKMS data basis 5

6 1. DKMS Development More than stem cell donations! Number of stemcell transplantations/ year DKMS Germany DKMS US DKMS Polska DKMS UK *06/2014 More than stem cell donations * source: DKMS data basis 6

7 1. DKMS Development DKMS today worldwide DKMS/DBC: 4.505,247 donors* = 18% Other donor centers (82%) *Status **Status Registered donors worldwide Total = 24,337,822** 7

8 1. DKMS Development There still needs a lot to be done to save more lives! Worldwide 1 a person is diagnosed with blood cancer every 35 seconds Patients from ethnic backgrounds underrepresented in the registry are less likely to find a match Thus, enhancing the chances of patients in different countries to find a match can only be done through: raising the number of potential stem cell donors in a country (quantity) expanding the diversity of existing HLA data in the database (quality) Source: 1 GLOBACON 2012, estimated incidence of Hodgkin lyphoma, Leukemia, Multiple myeloma, Non-Hodgkin lymphoma population worldwide; 8

9 2. Mission Our Mission We globally recruit, retain and motivate stem cell donors to save patients life Internationalization: DKMS/DBC donor centers and cooperation We are committed to providing all blood cancer patients with access to appropriate treatment Donor Recruitment: Quantity and quality (diversity, young males) 9

10 2. Mission Our Mission We support all efforts to improve the outcome of blood stem cell transplantation Donor Management: High resolution typing, high-risk program, fast force, Next Generation Sequencing We maximize patients well-being CTU Clinical Trial Unit 10

11 3. Internationalization Support of organizations abroad 11

12 4. Donor Recruitment Main Tasks Objectives: Quantity, quality, retention rate The main tasks of donor recruitment are: Raise Awareness and show ways of support Inform and educate new potential donors Offer simple and transparent ways of donor recruitment Strive for retention and reliability of new donors 12

13 4. Donor Recruitment Who can become a donor Between years > 50kg < BMI 40 No illnesses No organ or tissue transplants No addictive disorders Michael Steltzig has donated stem cells in

14 4. Donor Recruitment How, who, where How to become a donor Fill in Informed Consent form (INC) Blood sample or buccal swabs Match with patient 14

15 4. Donor Recruitment 4.1. Quantity Public Donor Drives Company Drives Mail Donors DKMS and volunteer groups organise local donor drives. Mostly patient-related. Companies give their employees the chance to register at DKMS and usually pay entire registration costs. Interested individuals register online or via mail. DKMS sends a registration kit, containing consent form and buccal swabs. 2013: 684 public drives new stem cell donors 2013: 484 company drives new stem cell donors 2013: new stem cell donors * German figures 15

16 4. Donor Recruitment Public Drives Patient-related drives Help XXX and other patients': Since 22 years, we organize donor drives every weekend. Our largest donor drive: registrations in one day for Lukas Posters: Help (name). and other patients. Become a stem cell donor! Donor drive for Lukas, February 2011, Salem 16

17 4. Donor Recruitment Company Drives Corporate Social Responsibility (CSR) mutual benefit Registration Money donation Cooperation Deutsche Telekom: 5 years cooperation, 8K registrations, 275K fundraising Volkswagen: 15 years cooperation, 14K registrations, 162 collections, 750K fundraising 17

18 4. Donor Recruitment Online Registration Interested individuals register online at our homepage to receive a registration kit 310,000 online registrations in 2014* Peaks of online registration numbers during e.g. strong billboard campaigns, or patient related donor drives (Emilie) *Cut off date

19 4. Donor Recruitment 4.1. Quantity Social media: Print: Celebrities: Hans Sarpei, 2014 Info material: 19

20 4. Donor Recruitment 4.1. Quantity - International Patient Campaigns Prerequisites: Difficult search due to rare tissue characteristics Agreement to cover in all DKMS / DBC countries Good network of the family International Patients 20

21 4. Donor Recruitment 4.1. Quantity - International Patient Campaigns Example: Margot Martini Cross media campaign to raise awareness To increase the point of contacts To exploit potential synergies internationally Margot Martini 21

22 4. Donor Recruitment 4.1. Quantity - Fundraising Fundraising & Event : Main activities Financing of new potential stem cell donors Extending the network of the DKMS family Winning prominent personalities and key contacts in companies Increasing of awareness of DKMS family Maintaining the value of contacts Legacies Major gifts Regular donations Multiple/Recurrent donations First time donations Interested Public 22

23 4. Donor Recruitment 4.2. Quality Target Young Males School Project Since 2004, more than 120,000 registrations Police Academies Since 2010, over 5,000 registrations Army , almost 53,000 registrations 23

24 4. Donor Recruitment 4.2. Quality Target Diversity Turkish Project Since 2006, 106,780 registered Turkish donors (status: 31. December 2013) African American Awareness Month USA: Since July 2013, more than 1,000 new registrations International Patient Campaigns For patients with rare HLA characteristics 24

25 4. Donor Recruitment 4.3. Retention Rate - Maximize via all channels Donor Recruitment Marketing PR Medical Aspects Improving the retention rate starts at recruitment Inform & educate Strict exclusion criteria Annual mailings to all our donors Specified mailings to assorted donors motivation up-to date contact information information about recent developments Public communication keep awareness high keep public informed minimize social and mental barriers Inform donors when further typing is performed* Blood samples for High-resolution typings* Phone interview at CT stage Personal care at donation process *Donor withdraws his consent at an early process step if he is no longer interested 25

26 4. Donor Recruitment 4.3. Retention Rate Retention Rate: Donors that do not withdraw their registration with DKMS. Exclusions due to medical reasons are not considered. Retention Rate (CT-Level) 100,00% 95,00% 90,00% 85,00% 96,17 96,37 95,54 95,80 96,36 80,00% * Retention Rate (WU-Level) 100,00% 95,00% 90,00% 98,47 98,77 98,49 98,61 98,78 85,00% 80,00%

27 5. Donor Management Additional Projects The main projects are Prospective mass typings low-res donors are re-typed in high-res to shorten search time Fast-Force-Donors Higher and faster availability by continuous update of medical status and absence (approx Fast-Force-Donors) 27

28 5. Donor Management Additional Projects Replacement donor program Find replacement donor with identical or equivalent HLA Loci, type high-res. Aim: To be prepared if a donor is unavailable, or to spare a donor multiple donations High-risk program Enquiry from doctors/search coordinators: in difficult cases, up to 400 re-typings from low resolution donors free of charge High-resolution typings of newly recruited donors A, B, C, DRB1, DQB1, DPB1, CCR5, ABO Rhesus 28

29 5. Donor Management Facts about Donors and their Typings High-res quality typings: HLA-A*, -B*, C*, DRB1*, DQB1*, DPB1*, AB0, Rhesus, CCR5 Chance that a potential donor matches a patient within the next 10 years Young donors (<=26y) donating stem cells within DKMS was 37,21% in 2013 Of young donors (< 30y) are typed at HLA-A, -B, -DRB1 Samples per week (A, B, C, DRB1, DQB1, DPB1, AB0, Rh, CCR5) with a total accuracy of 98.7% are typed by NGS 29

30 5. Donor Management Stem Cell Products Provided to Swiss TCs 4 transplant centers have received a stem cell product for a patient based in Switzerland from ; 386 stem cell products in total until the end of July Collections

31 6. Conclusion Summary From a donor center s point of view, it still is a long way to go, to provide equivalence in care and cure to global populations. What we do to achieve equivalence: Increase donor numbers by raising awareness Increase diversity of registered donors by targeted approaches Increase the amount of initial typing results for faster searches Increase retention rate of donors by informing, educating, and motivating them 31

32 6. Conclusion Summary Improve typing processes to quicken the provision of typing results for international searches Develop funding program for clinical research to further improve treatment of patients 32

33 6. Conclusion With a little help of volunteers All of this is only possible thanks to our numerous supporters and volunteers! 33

34 Thank you! DKMS Deutsche Knochenmarkspenderdatei gemeinnützige Gesellschaft mbh Kressbach 1, Tübingen T F post@dkms.de DKMS 2014