Representatives of the Association presented the check last Friday, March 8, to the main researchers, Dr. Assumpta Caixàs and Dr. Olga Giménez. The event was also attended by the expert nurse in Prader-Willi, Rocío Pareja, and the director of Research and Innovation, Lluís Blanch.
L'Catalan Association Prader-Willi Syndrome (ACSPW) works to improve the quality of life of affected people and their families, disseminating and encouraging knowledge of the syndrome and its characteristics in different areas. The donation they gave on Friday is the second they make to Parc Taulí, the result of the proceeds from the sale of Christmas items made by members of the organization. In 2018 the association also donated € 7.000 for the same study at Parc Taulí. The president of the ACSPW, Assumpta Mas, the treasurer, Manel Díaz, the secretary, José Garcia, together with the promoter of the solidarity activity and member of the ACSPW, M. José Lluch, handed over the check for € 7.500 to professionals working in the studio.
The aim of the clinical trial that has been carried out in Parc Taulí for a year and to which this money is destined, is to evaluate, among other parameters, the tone and muscular strength, as well as its representation. at the cerebral level by functional MRI, before and one year after the start of growth hormone treatment, in adult patients in whom a deficit has previously been demonstrated. The study lasts 14 months and involves 27 patients who have a follow-up with a very complete series of tests to assess their evolution. After these 14 months, patients will continue to receive growth hormone treatment with the doses the doctor deems appropriate.
The main researchers in this study are Dr. Olga Giménez Palop and Assumpta Caixàs Pedragós, from the Endocrinology and Nutrition Service, with the participation of a large number of collaborators from different medical specialties and from the Radiology Service (Unit of Magnetic Resonance Imaging Research) of the Hospital del Mar.
Parc Taulí is the center that treats the most patients with PWS in Catalonia. About thirty adult patients and about thirty children are regularly visited at this time. At the same time, the hospital also offers advice and sporadic visits to patients from other Autonomous Communities.
Once again we express our sincere gratitude to all the members of the Catalan Association Prader-Willi Syndrome for their effort and their complicity and collaboration in promoting research for the benefit of all patients.
Leave a Reply