In December 2020 the EJP RD launched its third Joint Transnational Call (JTC2021) co-funded with the European Commission to fund multilateral “Social sciences and Humanities Research to improve health care implementation and everyday life of people living with a rare disease”. The aim of the call was to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with a clear future benefit for patients. Sixteen countries joined this call: Austria, Belgium, Canada, Estonia, France, Germany, Hungary, Israel, Italy, Lithuania, Luxembourg, Poland, Slovakia, Spain, Switzerland and Turkey.
The process included a two-step submission and evaluation procedure.
In the first step a total of 38 eligible pre-proposals were submitted. After careful examination by the Scientific Evaluation Committee (SEC), 22 pre-proposals were selected for full submission. Each of the full proposals was then evaluated by at least two additional external experts whose reviews were sent to project coordinators in order to give them the opportunity of studying the assessments and commenting on experts’ arguments and evaluations. Both inputs were taken into account in a second SEC meeting.
Following the second SEC evaluation and ranking of the best projects, 12 consortia with a foreseen budget of about 11.5 Mio € were selected for funding, including 0.4 Mio € of co-funding from the European Commission.
The list of funded projects is detailed below. More information on the outcomes of the call (statistics, etc.) will be provided soon.
SAPIENCE: Social and psychological long-term impact of NMDA receptor encephalitis
LIVES: Quality of life of patients living with vascular
COCOS-IPF: Co-designing a Core Outcome Set for and with patients with Idiopathic Pulmonary Fibrosis (IPF)
Q.RARE.LI: Improving health-related quality of life in patients with rare autoimmune liver diseases by structured peer-delivered support: a transnational effectiveness-implementation hybrid trial
PAVE: Producing an Arthritis Value-Framework with Economic Evidence – Paving the Way for Rare Childhood Diseases
BUILDCARE: Building Support for Children and Families Affected by Stroke
GrowDMD: Growing into adulthood with Duchenne Muscular Dystrophy – comparing patient experiences and systems to optimize care
BUR-EB: Changes in the Socio-economic Burden of Epidermolysis Bullosa in Europe
eCARE-22q11: Evaluating Parent Perceptions, Economic Burden, and the Impact of Online Coaching Interventions for Parents of Children Diagnosed with the 22q11 Deletion Syndrome
NEUROREHAB: Impact of a neuro-cardiac rehabilitation program on the quality of life of children, adolescents and young adults with rare congenital heart disease: the multicentre randomized controlled QUALI-NEUROREHAB trial
PROFA: Patient-reported, health economic and psychosocial outcomes in Friedreich Ataxia
SeeMyLife: Holistic mixed approaches to capture the real life of children with Rare Eye Diseases