PACCT+ is available to researchers in academia and industry. A panel of 35 - 40 trained patients and caregivers are ready to provide researchers with non-binding recommendations, demonstrating inclusion of meaningful patient input in design and implementation of clinical and health services research.
Sharing this experience to benefit study design required patients to become familiar with clinical science research, in order to be in a position to offer meaningful feedback related to the impact of a study.
Good for Patients -
Patients with rare bone marrow failure diseases such as myelodysplastic syndromes (MDS), aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), are eager to propel research towards mitigation or elimination of their disease(s).
As ‘experts’ on the impact of and quality of life bone marrow failure, patients can provide early and meaningful input to guide the development of protocol for clinical studies in these rare diseases.
Good for Researchers -
Patient feedback early in a study’s design, can contribute valuable insight into the patient experience in clinical trials.
Attention to this authentic patient participation and input can aid researchers in eliminating perceived and real barriers to patient recruitment and retention in clinical trials.
In collaboration with industry and clinical researchers, PACCT+ offers an opportunity to shape research with recommendations from actual patients and caregivers.
Involving patients early in the research process vocalizes the patient experience to develop patient centered studies that increase recruitment and retention, and ultimately improve outcomes.
- October 2015 – AAMDSIF receives a funding award from PCORI for this project
- December 2015 – AAMDSIF held the first ‘PACCT+ management team meeting that included patients, academia and industry representatives along with staff. This group has guided development of the project so far with monthly meetings.
- April 2016 - The first project report was submitted to PCORI
- June 2016 – Patient recruitment publicity went out to select up to 20 patients and caregivers from the aplastic anemia, MDS and PNH communities to participate.
- September 24th, 2016 - Selected participants attended the in-person training to learn about clinical trial research processes.
- March 2017 – Second patient recruitment publicity went out to select an additional 20 patients and caregivers.
- June 17th, 2017 – Selected patients attended the second in-person training session.
*Upcoming: September 2017 – the Final Project Report will be submitted to PCORI
We are in the process of creating educational materials from the training, available to all patients in our population. Training modules for patients, caregivers and health professionals will be created from the recorded training seminar.
Outreach to academic and pharmaceutical researchers who could benefit from patient insight into the early stages of proposal development in clinical and health services research.
The proposal review process will be conducted using ProposalCENTRAL; a grant review portal AAMDSIF currently uses for its annual research grant review. Moving forward, AAMDSIF will set up ProposalCENTRAL accounts for each patient reviewer. The portal will allow committee members to review proposals, and collaborate with each other and perspective researchers in a closed and secure online space.
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