Swedish Parkinson Research Network (SWEPAR-net) is a research network for Parkinson research that includes neurological and neurosurgical clinics from all seven university hospitals in Sweden as well as preclinical centers. SWEPAR-net is a subordinate to the Swedish Movement Disorder Society, SWEMODIS, and is to represent its research branches: a clinical and an experimental branch. The clinical branch consists of representatives of Swedish university hospitals. The experimental branch consists of representatives from relevant preclinical research centres. The two branches interact closely. The central network office, located at Lund University, coordinates the network activities and supports the board. The aim of SWEPAR-net is to stimulate pre-clinical, clinical and translational PD related research in Sweden, in particular:
- To optimize the opportunities for productive translational research in Sweden
- To improve the conditions for carrying out clinical non-commercial as well as commercial multicentre studies in Sweden
Contact persons are professor Per Odin (chair) and PhD Stina Jonasson (coordinator).
SWEPAR-nets business are regulated by its’ bylaws.
Board
The board consists of 14 representatives from the clinical (n=8) and the pre-clinical side (n=6), covering all seven university hospitals in Sweden (i.e., Lund, Stockholm, Gothenburg, Uppsala, Umeå, Linköping and Örebro). The board members are:
Per Odin (Chair, Lund; clinical representative)
Anders Johansson (Vice chair, Stockholm; clinical representative)
Håkan Widner (Secretary, Lund; clinical representative)
Angela Cenci Nilsson (Lund; pre-clinical representative)
Per Svenningsson (Stockholm; pre-clinical representative)
Björn Holmberg (Gothenburg; clinical representative)
Filip Bergquist (Gothenburg; pre-clinical representative)
Nil Dizdar (Linköping; clinical representative)
Martin Hallbeck (Linköping; pre-clinical representative)
Dag Nyholm (Uppsala; clinical representative)
Anna Erlandsson (Uppsala; pre-clinical representative)
David Bäckström (Umeå; clinical representative)
Per Petersson (Umeå; pre-clinical representative)
Karin Gunnarsson (Örebro; clinical representative)
Meetings
SWEPAR-net meets physically twice a year at different locations in Sweden, and have so far had 28 meetings:
Trolleholms Castle, May 7-8, 2010
Steningevik, Nov 19-20, 2010 (Guest: Wolfgang Oertel, GPS)
Rusthallargarden, Arild, May 12-13, 2011 (Guest: Karl-Göran Thorngren, Rikshöft)
Johannesbergs Castle, Stochholm, Oct 10-11, 2011 (Guest: Karen Marder, PSG)
Hotell Skansen, Bastad, May 24-25, 2012 (Guest: Michael Schwarzschild, PSG)
Ulfsunda Slott, Oct 4-5, 2012
The Lodge, Genarp, May 1-3, 2013
Ulfsunda Slott, Sept 23-24, 2013 (Guest: Hubert Fernandez, PSG)
Hilton Slussen, Stockholm, Mar 13, 2014
Johannesbergs Castle, Stochholm, Sept 23-24, 2014
Hotell Skansen, Bastad, May 29-30, 2015
Akademiska Sjukhuset, Uppsala, Nov 13-14, 2016
Biskopshuset, Lund, Nov 10-11, 2016
Hotel Tivoli, Copenhagen, Mar 23, 2017
Grand Hotell, Lund, May 25-26, 2018
Steningevik, Märsta, Nov 9-10, 2018
Scandic Continental, Stockholm, Mar 21, 2019
Karolinska University Hospital, Stockholm, Oct 10, 2019
Zoom-meeting, Apr 16, 2020
Karolinska University Hospital, Stockholm, Oct 9, 2020
Hotell Skansen, Bastad, May 28, 2021
Karolinska University Hospital, Stockholm, Oct 28, 2021
Steningevik, May 20-21, 2022
Karolinska University Hospital, Stockholm, Nov 12, 2022
Krusenbergs Castle, May 12-13, 2023
Karolinska University Hospital, Stockholm, Nov 11, 2023
Projects
- Translational PD research (example: STEM-PD at Lund University: Implantation of stem cell-derived dopaminergic neurons in Lund; will be expanded to multicenter study depending on initial results)
- Pharmaceutical multicenter studies (see examples below)
- Neurosurgical multicenter studies
- National Parkinson registry, ParkREG (a national patient registry has been set up, which contains information about >13000 Swedish PD patients, with a mean number of 3.5 visits/participant. The registry is used for quality control of health care, but also for research. SWEPAR-net is scientific board for the registry.)
- Gene bank
- Tissue bank (Has been set up in connection with ParkREG, 1000 patients, 1000 controls)
- Diagnosis and differential diagnosis
- Health economy (several ongoing projects in collaboration with the Swedish Institute for Health Economy, IHE)
Ongoing academic research projects within SWEPAR-net
Included centers are presented within brackets.
- Translation program for the rating scales MDS-NMS and UDysRS (All SWEPAR-net centers)
The scales have been translated from English to Swedish according to MDS protocol. Cognitive testing is ongoing on a small sample (n=10). Large scaled testing (n=250-300) is scheduled to start April, 2024.
- PKG Rotigotin (All SWEPAR-net centers)
The aim of the study is to explore the effect of Rotigotin on sleep, assessed with Parkinson’s Kinetigraph (PKG). Inclusion is ongoing.
- Lecigon Sleep (Lund, Uppsala)
The study explores the effect of LECIG on sleep in people with PD. Questionnaires, PKG and polysomnography are being used. Inclusion is ongoing.
- Montpark (Stockholm, Lund, Gothenburg, Uppsala)
National study on Montelukast oral film as potentially disease-modifying treatment in mild-moderate Parkinson’s disease; double-blind, randomized, placebo-controlled phase II.
- Lecigon – ParkREG (Lund, Stockholm, Gothenburg, Uppsala)
Prospective registry study on “real-life” use of Lecigon infusion treatment.
Ongoing commercial research projects within SWEPAR-net
- IRL-752 (Lund, Stockholm, Gothenburg and Uppsala)
Aims to study the effects of the drug Pirepemat on fall frequency in patients with Parkinson’s disease.
- 5-2-1 (Lund, Stockholm, Gothenburg)
An investigation of how many patients in the Swedish Parkinson Registry that fulfills the so called “5-2-1-criteria” but still don’t have any advanced treatment, and the reasons for this. Moreover, the study will analyze health-related quality of life in patients with PD who fulfills and those who don’t fulfills the 5-2-1-criteria.
- BIA 28-6156 (Lund, Stockholm and Gothenburg)
A phase 2, randomized, double-blind, placebo-controlled study to evaluate the efficacy, safety and tolerability of BIA 28-6156 in subjects with PD with a pathogenic variant in the Glucocerebrosidase (GBA1) gene. Progression will be evaluated by using the MDS-UPDRS part II.
Planned commercial studies within SWEPAR-net
- RO7486967 (Lund, Stockholm and Uppsala)
The study will investigate the effects of a potentially disease modifying drug.
Examples of finalized studies within SWEPAR-net
- Infudopa (Lund, Uppsala, Stockholm, Gothenburg, Linköping)
Pharmacokinetic study with a new levodopa sc and iv infusion substance.
- The Nodstop study (Stockholm, Gothenburg, Linköping, Karlstad, Kristianstad)
Observational study examining the skin reactions connected to infusion of different types of apomorphine for sc infusion.
- NLX-112 (Lund, Stockholm, Uppsala and Gothenburg)
A safety and tolerability study of the drug NLX-112 in PD patients with disabling dyskinesias. The results showed that safety and tolerability were good, with no serious adverse events in the active group.
- M15-741/737 (Lund, Stockholm, Gothenburg)
An open-label study that explored the safety, tolerability and effect of 24-hour daily exposure of continuous subcutaneous infusion of L-dopa (ABBV-951) in patients with PD. The most frequent adverse events were related to infusion site; the majority were non-serious, mild or moderate in severity, and resolved spontaneously.
- MDS-UPDRS Translation Program (All SWEPAR-net centers)
The MDS-UPDRS was translated from English to Swedish. The translated version was thereafter validated in 350 patients and is now ready for use in research and clinical practice.
- COVID-19 project (All SWEPAR-net centers)
This is a case-controlled registry and questionnaire study that investigates the impact of COVID-19 on Parkinson’s disease. The results show that those who have survived a COVID-19 infection is not worse in their PD symptoms than those who have not been infected.
- Work in Parkinson’s disease (All SWEPAR-net centers)
A registry and questionnaire study that explored factors affecting the ability to stay at work when having PD. The results show that the strongest supportive factors for a person with PD to stay at work is an interest in work, social support from family and flexible working hours and work routines.
- Sick-leave and Parkinson’s disease (All SWEPAR-net centers)
A national registry study showing that PD patients start to have more sick-leave than controls already 5 years before diagnosis.