Winner of the 2022 "Rare Diseases and Pain" award

June 3, 2022 | News


Foundation For Rare Diseases & APICIL Foundation


On the occasion of our Annual Scientific Symposium, we had the great honor to award the Rare Diseases and Pain Prize to Professor Nicolas PENEL, Oscar Lambret Center, Lille for his project on desmoid tumors.

This prize is awarded to the head of a fundamental, clinical or human and social sciences research team whose research work focuses on the theme of "rare diseases and pain". It was awarded by a committee of experts set up by the Foundation For Rare Diseases and upon final validation by the Scientific Council of the APICIL Foundation.


General Public Summary of Project Supported:

"Desmoid tumors (ORPHA:873) are benign tumors, rare (less than 400 cases/year in France), diagnosed around the age of 40 and affecting women 4 times more frequently than men. They can appear under the skin, on the abdomen, arms, legs, chest, neck or deeper in the abdomen. These tumors have 2 important clinical characteristics: their evolution cannot be predicted and they are painful.

ALTITUDES is a prospective clinico-biological database that has included 630 patients with incident desmoid tumors. The recruitment is completed and we are starting the different subprojects. In this study, we prospectively collected at inclusion (diagnosis), annually and in case of tumor event (relapse, progression ...) pain (visual analog scale), quality of life scales (QLQ-c30), anxiety/depression (HADS), but also employment status, marital status and income. The ALTITUDES_TR2 project has 4 objectives, aiming to estimate the frequency of pain, identify associated factors, evaluate whether pain is associated with a higher risk of relapse/progression of the disease, and compare the outcome of patients with and without pain.

This is an ancillary and exploratory project (ALTITUDES_TR2) in the humanities and social sciences of the ALTITUDES study."