1. Dr. Cheedy Jaja
– Heard of him from the SickleScan website, got in contact b/c one of Prof. Cheng’s contacts and one of Khanjan’s contacts from Sicklescan
– We received feedback on the usability of our device and how cost, over everything, is the most important and the biggest distinguisher for a medical device.
– Our device is another option to use in the future for sickle cell screening. If we join the effort to try and have the medical system adopt a sickle cell protocol we could help write/develop the protocol and be the man power behind the effort.
– We need to bring back a working device ready for clinical testing that can be compared to the devices Dr. Jaja is testing now in order to receive more feedback.
2. Sia Evelyn Nyandeno (SCCAN)
– Traveled to Kono to meet Dr. Jaja at the Jarbario Clinic. Sia is the founder of SCCAN (Sickle Cell Carers Awareness Network), an awareness program that helps care for children and adults who suffer from sickle cell disease in Kono. Sia met Dr. Jaja on Facebook and asked him to come support the SCCAN program at the Jericho Road clinic.
– SCCAN runs a program at the Jericho road clinics which diagnoses and treats patients. Although they are currently using the SickleSCAN device, they are very open to trying another device which is cheaper and more effective.
– This partnership has the potential to be symbiotic, and can be better, once we have a functioning device. Specifically, they will help us with the on-the ground expertise, and we will help them diagnose more patients for a cheaper price.
3. Sickle Cell Society (Specifically: Mrs. (Sister) Amelia Gabba (Sickle Cell Society) and Dr. Gibrilla Fadlu-Deen (Sickle Cell Society/Congought Hospital))
– Found the Sickle Cell Society website and mission online, on their website. Made contact with the Sickle Cell Society through a publication involving a study run by heads of the Sickle Cell Society in Sierra Leone.
– Met with Ms. Gabba and Dr. Fadlu-Deen to learn more about there program for people with Sickle Cell Disease, said they would possibly be open to running a clinical trial with us
– If they chose to adapt our device in the future after a clinical trial and manufacturing they will be saving a lot of money because they are currently paying $25 for each diagnosis making our partnership symbiotic in the long run.
4. Prof. Martin Grobusch (Masanga Hospital)
– Prof Martin Grobusch is the director of the medical research unit at a hospital in Masanga. Masanga is the only hospital in Sierra Leone that has its own electrophoresis machine (the gold standard for diagnosing sickle cell).
– Since the Masanga hospital is research-driven, and already has an electrophoresis machine, this partnership has the potential to be very symbiotic once we have a functioning device. Specifically, they could serve as a location for clinical trials, since they have sickle cell expertise and a mechanism for comparing our device, while we would be providing them with additional research, publication, and prestige opportunities.
5. Dr. Sandra L Lako (Aberdeen Women’s Hospital)
– Dr. Sandra Lako is a pediatrician at a major hospital in Freetown. She is also doing her MPH dissertation on sickle cell. We met with her in order to learn more about sickle cell at her hospital in Freetown. Although at the time this partnership was very one sided (we were learning about sickle cell conditions in Freetown), there is a lot of potential for the partnership to become symbiotic in the future.
– Since Dr. Lako is focused on helping her patients, and has an academic interest in sickle cell, once we have a functioning, proven device, we can form a strong partnership. Specifically, we can provide her with a device which will help her patients, and she can provide us with feedback and information on the local healthcare system.
6. Dr. Abu Bakarr Bah (Children’s Hospital)
– Dr. Abu Bakarr Bah is a pediatrician in Freetown with an interest in sickle cell, who was recommended to us by Dr. Lako. Like with Dr. Lako, this relationship has so far been very one sided (we were learning about sickle cell conditions in Freetown).
– During our meeting, Dr. Bakarr Bah expressed his enthusiastic interest in working with us in the future. Specifically, he hopes to use our device to improve the wellbeing of his patients, and believes that by having more people in Sierra Leone pushing for a national screening program, the problem can eventually be addressed. Similarly, Dr. Bakarr Bah would be helping us by using our device, and working towards our mutual goal of reducing the childhood mortality associated with sickle cell.
7. Hasan & World Hope International
– Our main partner in Sierra Leone, connected through GSIF organizer Khanjan. World Hope has helped us get our foot in the door to a lot of these other possible partnerships. Hasan is currently working for Ukweli and was a recourse to all teams, providing insight on locations in Sierra Leone and meaning fully questions that need to be asked
– Our team specifically does not have a symbiotic relationship with World Hope, however Lehigh does. The relationship with Lehigh is symbiotic because they provide us with resources on the ground and we are bringing them more manpower and ideas.
8. Dr. James Bunn (WHO Child Health Specialist)
– Dr. James Bunn is a Child Health Specialist at the WHO, who has experience working with sickle cell. We were put into contact with him by Anna Vines and the Sickle Cell Society. During our meeting, Dr. Bunn was very helpful to us in talking about next steps, and ethics.
– In the future, this relationship has the potential to become mutually beneficial, as our device has the potential to make a national screening program cost-effective. Therefore, we could help him advance his goals of improving child health in Sierra Leone, while he provides us with policy help.
9. Faye Simmonds (E-health)
– Was introduced to E-Health and Faye Simmonds by Dr. Mary Hodges who was unfortunately not in Sierra Leone during the time we were there. Was able to talk to Ms. Simmonds and her colleagues in Nigeria about their SCD programs.
– Learned a lot about how all the partnerships above are connected and was added to the SCD google group. Learned more about their monthly meetings and their push to start a SCD screening program and treatment program. Heard about their program in Nigeria and the deice they are currently using there and how their treatment program runs.
– This relationship is not directly symbiotic however we were added to the google group through Ms. Simmonds, and in the future we could possibly have something to share that would benefit the group as a whole.
– Applied the the E-Team Stage 1 grant and were one of the teams to win, just sent in our E-Tram Stage 2 grant, and are waiting to hear back. This partnership is mainly a funding partnership. They are not only providing us with funding but also advice and training at their workshops. This is not a totally symbiotic relationship, we learn and gain a lot from them and they gain the ability to say they have funded our team which could possibly benefit them in the future but right now they are not receiving a lot out of this partnership.
Coalition: Stop Sickle Sick aka. Triple S, S cubed, SSSSSSSSSS (sound it out)
– Mission: To lower sickle cell mortality, specifically during childhood, by implementing a low-cost screening device partnered with a treatment program for all sickle cell patients.
– Key Partners: When we were in Sierra Leone, we found out that there was a google group for all individuals in the country who were interested in sickle cell. Because it was such a small community, we were able to meet everyone who is working to improve the lives of individuals with sickle cell in Sierra Leone, and would want all of these people to be our partners in the coalition. These partners are:
1. SCCAN (opinion leaders, resource partners, signaling partners) – including Dr. Jaja and Sia; a sickle cell clinic in Kono district; have sickle cell expertise and program in place for those diagnosed
2. WHO (opinion leaders, policy makers)- in particular Dr. James Bunn, a child health specialist with an interest in sickle cell; as a powerful, policy setting organization, having a partner from the WHO will be essential.
3. Sickle Cell Society (opinion leaders, resource partners, signaling partners) – including Dr. Gibrilla Fadlu-Deen, the medical director; a sickle cell program in Freetown; have sickle cell expertise and program in place for those diagnosed
4. E-Health (resource partners) – has experience setting up sickle cell programs in other LMIC countries, and is trying to do the same in Sierra Leone; also have experience with clinical trials and low cost technology