Lymphoma Coalition 2020 GPS Final Numbers & CAR-T Toolkit

Dear Members,

A quick update as the final numbers for the 2020 GPS have been tabulated, which many have been anxiously awaiting.
 
As well, to help members continue to support patients with lymphoma and their carers, the CAR-T toolkit is now available, accessible via the link at the bottom of this email. If you need help with local customisation, please reach out to marketing@lymphomacoalition.org.

 



2020 GLOBAL PATIENT SURVEY ON LYMPHOMA & CLL

Thank you to everyone who participated in promoting the 2020 Global Patient Survey. Due to a combined effort of your patient organisations, we have well surpassed last year's survey count, and noticeably exceeded expectations for this year's goal.

The final total number of responses is
11 879 (2 699 caregivers; 9 180 patients). See below for a breakdown of each member country who received responses:
 
Country Total  Caregiver Patient Country Total  Caregiver Patient
Algeria 7 3 4 Lithuania 47 10 37
Argentina 138 25 113 Mexico 12 2 10
Australia 422 64 358 Morocco 29 14 15
Barbados 1 0 1 Netherlands 333 27 306
Belgium 165 18 147 New Zealand 367 29 338
Brazil 8 1 7 Norway 6 0 6
Bulgaria 117 35 82 Poland 1 0 1
Canada 603 63 540 Portugal 24 2 22
China 3240 1483 1757 Romania 1 0 1
Colombia 2 0 2 Serbia 206 64 142
Croatia 21 3 18 Singapore 1 0 1
Czech Republic 9 1 8 Slovakia 164 62 132
Denmark 20 2 18 Slovenia 15 2 13
Finland 53 2 51 South Africa 12 5 7
France 1747 170 1577 South Korea 147 2 145
Germany 51 7 44 Spain 59 9 50
Greece 11 3 8 Sweden 190 4 186
Hong Kong 27 10 17 Switzerland 69 6 63
Hungary 3 0 3 Turkey 4 1 3
India 200 81 119 United Kingdom 743 64 679
Ireland 179 31 148 United States 1098 105 993
Israel 6 1 5 Uruguay 106 23 83
Italy 803 225 578 Venezuela 4 2 2
Japan 290 46 244        
 The highlighted countries have surpassed 100 patient responses, and will be receiving a country report. 

Survey responses have also been tracked by subtype:
Subtype Total    Caregiver  Patient  
Anaplastic Large Cell 154 69 85
Burkitt's 177 85 92
CLL/SLL 2019 244 1775
CL 525 55 470
DLBCL (unspecified) 1281 329 952
DLBCL – Activated B-Cell (ABC) 525 235 290
DLBCL – Germinal Centre B-Cell (GCB) 333 150 183
Extranodal Killer T-cell 258 129 129
FL 1786 266 1520
HL 1692 377 1315
Mantle Cell 384 161 223
MALT / Marginal Zone 267 59 208
Peripheral T-­cell 269 151 118
Transformed 167 40 127
WM 1069 110 959

Country reports and subtype reports are currently being written, and will be distributed to members in the coming months. Please note, the reports at the earliest will be available in June and may be delayed due to capacity related to COVID-19.  An update will be sent closer to June on when to anticipate these reports.
 
CAR-T TOOLKIT

CAR-T is a complicated treatment with a protocol unlike any other therapy used to date to treat lymphomas. LC has created a variety of resources to help you communicate the facts about CAR-T to your patients.
 
On the Member's side of the LC website, you will find the CAR-T toolkit which contains:
  • Written materials
    • 5 different documents explaining the science, protocol, side effects and challenges of CAR-T.
       
  • Templates
    • Customisable documents for you to provide local information to your patients on CAR-T availability.
       
  • Videos​
    • Watch and share videos on experts in the field speaking about CAR-T.
CLICK HERE TO ACCESS THE CAR-T TOOLKIT

If you need help with your login to the Member's side, contact marketing@lymphomacoalition.org

On the LC website, you will also find a new page dedicated to CAR-T, including a way to easily access the latest news on CAR-T in the resource library.

A toolkit on the Fear of Cancer Recurrence (FCR) will also be coming soon. 

Warm regards,


Lorna




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