NEEDSinALS - Network for DEterminants of Existential Decisions in Amyotrophic Lateral Sclerosis

Needs in ALS

Within the “Needs in ALS” project, neurologists, psychologists, medical ethicists and neuroscientists work in Germany, Sweden and Poland. Patients, their caregivers and physicians are interviewed in semi-structured and qualitative ways. In this prospective longitudinal study, patients from early to late disease stages will be included.

In Germany, it is Helena Aho, Jürgen Keller, Olga Helczyk, Stefanie Böckler and Dr. Sarah Böhm under supervision of the project leader PD Dr. Dr. Dorothée Lulé. The team works in the department of Neurology of University of Ulm managed by the ALS specialist Prof. Dr. Albert Ludolph. Lea Schuhmacher at the Institute of the History, Philosophy and Ethics of Medicine at the University of Ulm conduct the ethical analysis for the project and Dr. Gisela Badura-Lotter is the coordinator of the ethical team of the project.

Furthermore, members of the German MND-Net (www.mnd-als.de) are part of the NEEDSinALS team, such as Prof. Dr. Susanne Petri and Prof. Dr. Reinhard Dengler and the ALS-Team of the department of Neurology at the University of Hannover, Prof. Dr. Thomas Meyer and his ALS-Team at the Charité Berlin, Prof. Dr. Julian Grosskreutz and the ALS-Team of the department of Neurology at the Universität Jena, Dr. Torsten Grehl and his team at University clinics Bochum and Prof. Dr. Andreas Herrmann and his ALS-Team at the department of Neurology at the University of Dresden.

The communication with ALS patients in the far advanced stages of the disease (the patients in so called locked-in stage) is carried out in cooperation with the department of interventional psychology of the University of Würzburg under supervision of Prof. Dr. Andrea Kübler and the institute for Medical Psychology of the University of Tübingen under supervision of Prof. Dr. mult. Niels Birbaumer.

In Poland Prof. Dr. Magdalena Kuzma together with Natalia Szejko, Beata Pilczuk and Katarzyna Cieæwierska comprise the Polish team at the department of Neurology of Kozakiewicz Medical University of Warsaw. Dr Barbara Fijakowska of the department of medical ethics at the University of Warsaw under the head of Prof Dr Tomasz Pasierski is responsible for the ethical issues in Poland.

In Sweden Prof. Dr. Peter Andersen, head of the Department of Pharmacology and Clinical Neuroscience at Umeå University Hospital and Dr. Olof Semp are responsible for the Swedish part of the project. Prof. Dr. Niels Lynoe at the Department of Medical Ethics at the Karolinska institute, University of Stockholm, supports the Swedish team with regards to the ethical issues of this project.