International Data Sets

Om als revalidatiecentra van elkaar te kunnen leren is het nodig elkaars uitkomsten te kunnen vergelijken. Daarvoor is nodig om gegevens over de dwarslaesie en bijkomende problemen op een nationaal en internationaal vergelijkbare manier te kunnen vastleggen. Binnen de International Spinal Cord Society (ISCoS) loopt sinds 2002 een project waarin “datasets” worden ontwikkeld voor de verschillende aspecten van dwarslaesie, zoals bijvoorbeeld blaasmanagement, decubitus en pijn.

Meer informatie over dit project is hier te vinden.

Projectgroep

  • International Spinal Cord Injury Data Set Committee to ISCoS Scientific Committee
    Chair: Fin Biering-Sørensen
    Vice-chair: Vanessa Noonan

    Members:
    Chairs of the working groups for the International SCI Data Sets:

    Michael DeVivo (International SCI Core Data Set)
    Bonne San Bon Lee (International Classification of External Causes of Injury (ICECI))
    Peter New (International SCI Non-traumatic SCI Data Set (Basic and Extended))
    Vanessa Noonan (International SCI Spinal Column Injury Basic Data Set / International SCI Surgical and Interventional Procedures Basic Data Set)
    Lance Goetz (International SCI Urinary Tract Infection Basic Data Set)
    Klaus Krogh (International SCI Bowel Function Basic Data Set / International SCI Bowel Function Extended Data Set)
    Marcalee Sipski Alexander (International SCI Female Sexual and Reproductive Function Basic Data Set / International SCI Male Sexual Function Basic Data Set)
    Eva Widerström-Noga (International SCI Pain Basic Data Set/ International SCI Pain Extended Data Set)
    Andrei Krassioukou (International SCI Cardiovascular Function Basic Data Set)
    William Bauman (International SCI Endocrine and Metabolic Function Basic Data Set/ International SCI Endocrine and Metabolic Function Extended Data Set)
    Marcel Post (International SCI Activity and Participation Basic Data Set)
    Susan Charlifue (International SCI Quality of Life Basic Data Set)
    Yuying Chen (International SCI Socio-demographic Data Set)
    Nancy Brackett (International SCI Male Fertility Data Set)
    Leslie Morse (International SCI Fracture History Data Set)
    Mark Nash (International SCI Voluntary Exercise Data Set)
    Fin Biering-Sørensen (International SCI Lover Urinary Tract Function Basic Data Set / International SCI Urodynamics Basic Data Set / International SCI Urinary Tract Imaging Basic Data Set / International SCI Pulmonary Function Basic Data Set / International SCI Skin and Thermoregulation Function Basic Data Set / International SCI Musculoskeletal Basic Data Set / International SCI Upper Extremity Basic Data Set)

    Chairs of the working groups (WGs) for the National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS), Common Data Elements (CDEs) for clinical research and trials:

    Yuying Chen (Demographics WG)
    Vanessa Noonan (Care WG)
    John Steeves (Neurological WG)
    Kim Anderson (Functional WG)
    Susan Charlifue (Participation and Quality of Life WG)
    Eva Widerström-Noga (Pain – Psychological WG)
    Keith Tansey (Electrodiagnostics WG)
    Adam Flanders (Imaging WG)

    Members with special knowledge in Pediatric SCI Data:

    Lawrence Vogel
    Mary Jane Mulcahey

    Associate members

    Joanne Odenkirchen, NIH, NINDS
    Lyn Jakeman, NIH, NINDS

Financiering

Rick Hansen Foundation.

Projectplanning

Doorlopend.

Contact

Marcel Post, m.post@dehoogstraat.nl

Publicaties

Post MWM, Nachtegaal J, Van Langeveld SA, Van de Graaf M, Faber WX, Roels EH, van Bennekom CAM. Progress of the Dutch Spinal Cord Injury Database: Completeness of Database and Profile of Patients Admitted for Inpatient Rehabilitation in 2015. Top Spinal Cord Inj Rehabil. 2018 Spring;24(2):141-150.

Nachtegaal J, Van Langeveld SA, Slootman H, Post MWM; Dutch-Flemish Spinal Cord Society. Implementation of a Standardized Dataset for Collecting Information on Patients With Spinal Cord Injury. Top Spinal Cord Inj Rehabil. 2018 Spring;24(2):133-140.

Biering -Sørensen F, Alexander MS, van Asbeck FW, Donovan W, Krassioukov A, Post MW. Version 1.1 of the international spinal cord injury skin and thermoregulation function basic data set. Spinal Cord. 2017 Jun;55(6):566-569. 

Post MW, Charlifue S, Biering-Sørensen F, Catz A, Dijkers MP, Horsewell J, Noonan VK, Noreau L, Tate DG, Sinnott KA. Development of the International Spinal Cord Injury Activities and Participation Basic Data Set. Spinal Cord. 2015 Oct 20.
Charlifue S, Post MW, Biering-Sørensen F, Catz A, Dijkers M, Geyh S, Horsewell J, Noonan V, Noreau L, Tate D, Sinnott KA. International Spinal Cord Injury Quality of Life Basic Data Set. Spinal Cord. 2012 Sep;50(9):672-5.

Biering-Sørensen F, Alexander MS, Burns S, Charlifue S, DeVivo M, Dietz V, Krassioukov A, Marino R, Noonan V, Post MW, Stripling T, Vogel L, Wing P; Executive Committee for the International SCI Standards and Data Sets. Recommendations for translation and reliability testing of International Spinal Cord Injury Data Sets. Spinal Cord. 2011 Mar;49(3):357-60.

DeVivo M, Biering-Sørensen F, Charlifue S, Noonan V, Post M, Stripling T, Wing P; Executive Committee for the International SCI Data Sets Committees. International Spinal Cord Injury Core Data Set. Spinal Cord. 2006 Sep;44(9):535-40.

Biering-Sørensen F, Charlifue S, DeVivo M, Noonan V, Post M, Stripling T, et al. International Spinal Cord Injury Data Sets. Spinal Cord 2006; 44(9): 530-4.