Körperliches Wohlbefinden und Bewegungsverhalten von Patientinnen und Patienten mit Myeloproliferativen Neoplasien (MPN) oder Mastozytose - OSHO #97

Overview
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Mittels Patientenbefragung (analog und online) wurde erfasst, wie a) das körperliche Wohlbefinden und das Bewegungsverhalten von Patienten mit MPN oder Mastozytose ist, b) welche Symptome / Nebenwirkungen / Begleiterkrankungen und Ängste die Patienten in ihrer körperlichen Aktivität einschränken sowie c) wie hoch die Motivation zu körperlicher Aktivität ist und welche Präferenzen diese Patientenkohorte hat. Ziel war es spezifische Trainingsempfehlungen für diese Patientenkohorte zu erarbeiten.

Programme: Universitätsmedizin Rostock (UMR)

SEEK ID: https://ldh.mediz-rostock.imise.uni-leipzig.de/projects/9

Public web page: Not specified

Organisms: No Organisms specified

NFDI4Health PIs: No PIs for this Project

Project created: 20th Nov 2024

Extended Metadata (Nfdi4Health MDS 3.3)

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Id of the project(*) : 29334

Resource classification(*)

Type of the resource(*) : Study

Title(s)/name(s) of the Project

Title/name(*) : Körperliches Wohlbefinden und Bewegungsverhalten von Patientinnen und Patienten mit Myeloproliferativen Neoplasien (MPN) oder Mastozytose
Language of the title/name(*) : German

Title/name(*) : Physical well-being and exercise behavior of patients with myeloproliferative neoplasms (MPN) or mastocytosis
Language of the title/name(*) : English

Acronym(s) of the Project

Acronym(*) : OSHO #97
Language of the acronym(*) : German

Acronym(*) : OSHO #97
Language of the acronym(*) : English

Description(s) of the Project

Description(*) : Mittels Patientenbefragung (analog und online) wurde erfasst, wie a) das körperliche Wohlbefinden und das Bewegungsverhalten von Patienten mit MPN oder Mastozytose ist, b) welche Symptome / Nebenwirkungen / Begleiterkrankungen und Ängste die Patienten in ihrer körperlichen Aktivität einschränken sowie c) wie hoch die Motivation zu körperlicher Aktivität ist und welche Präferenzen diese Patientenkohorte hat. Ziel war es spezifische Trainingsempfehlungen für diese Patientenkohorte zu erarbeiten.
Language of the description(*) : German

Description(*) : A patient survey (analog and online) was used to determine a) the physical well-being and exercise behavior of patients with MPN or mastocytosis, b) which symptoms / side effects / concomitant diseases and anxieties limit the physical activity of patients, and c) the level of motivation for physical activity and the preferences of this patient cohort. The aim was to develop specific training recommendations for this patient cohort.
Language of the description(*) : English

Keyword(s) describing the Project

Keyword(*) : physical exercise

Keyword(*) : Myeloproliferative neoplasms (MPN)

Keyword(*) : Chronic Myeloid Leukemia (CML)

Keyword(*) : supportive care

Keyword(*) : quality of life (QoL)

Keyword(*) : cancer-related fatigue (CrF)

Keyword(*) : anxieties

Language(s) of the project : English, German

Contributor(s) of the Project

Is it a personal or organisational contribution?(*) : Personal
Details about the contributing organisation(s)/institution(s)/group(s)
Contributor type(*) : Not specified
Funding identifier(s) : Not specified
Name of the organisation/institution/group(*) : Not specified
Details about the contributing person(s)
Contributor type(*) : Principal investigator
Given name(*) : Sabine
Family name(s)(*) : Felser
Digital identifier(s)
Identifier(*) : 0000-0002-4882-0468
Scheme(*) : ORCID
Email address : sabine.felser@med.uni-rostock.de
Phone number : +49 (0)381 494 7395
Organisation(s) associated with the contributor
Name(*) : Universitätsmedizin Rostock
Address : Schillingallee 35, 18057 Rostock
Web page : https://www.med.uni-rostock.de/
Digital identifier(s)
Identifier(*) : 0000 0000 9737 0454
Scheme(*) : ISNI
Identifier(*) : 04dm1cm79
Scheme(*) : ROR
Name(*) : Universitätsmedizin Rostock, Klinik für Hämatologie, Onkologie, Palliativmedizin
Address : Ernst-Heydemann-Straße 6, 18057, Rostock, Deutschland
Web page : https://onkologie.med.uni-rostock.de/
Digital identifier(s)
Identifier(*) : 04dm1cm79
Scheme(*) : ROR

Is it a personal or organisational contribution?(*) : Organisational
Details about the contributing organisation(s)/institution(s)/group(s)
Contributor type(*) : Research group
Funding identifier(s) : OSHO #97
Name of the organisation/institution/group(*) : Ostdeutsche Studiengruppe für Hämatologie und Onkologie e. V.
Details about the contributing person(s)
Contributor type(*) : Not specified
Given name(*) : Not specified
Family name(s)(*) : Not specified
Digital identifier(s)
[]
Email address : Not specified
Phone number : Not specified
Organisation(s) associated with the contributor
Name(*) : Ostdeutsche Studiengruppe für Hämatologie und Onkologie e. V.
Address : Strümpellstraße 42, 04289, Leipzig, Deutschland
Web page : https://osho-studiengruppe.de/
Digital identifier(s)
[]

Alternative identifiers

Type of the registry(*) : DRKS
Identifier(*) : DRKS00023698

Characteristics of the Project

Is it an interventional or non-interventional Project? : Non-interventional
Specification of the type of the Project
Interventional Project type : []
Non-interventional Project type : Other
Primary health condition(s) or disease(s) considered in the Project
Primary health condition or disease name(*) : Cancer
Terminology/classification(*) : ICD-10
Code of the health condition or disease : D45, D47, C92.1, C96.2
Groups of diseases or conditions(*)
Which groups of diseases or conditions were the data collected on? : Neoplasms (II)
On which diseases or conditions were the data collected? : []
Collects mortality data? : Not specified
Administrative information about the Project
Status of the ethics committee approval : Request for approval submitted, approval granted
Overall Project status : Completed: Recruitment, data collection, and data quality management completed normally
Participants enrolled by invitation? : Yes
Start date : 1 January 2021
End date : 31 December 2022
Mono- or multicentric? : Multicentric
Number of centers : 14
One or more data providers? : Not specified
Number of data providers : Not specified
Primary subject(*) : Person
Eligibility criteria for Project participants
Eligibility criteria: Minimum age
Minimum eligible age(*) : 18
Unit of age(*) : Years
Eligibility criteria: Maximum age
Maximum eligible age(*) : 99
Unit of age(*) : Years
Eligible gender : Male, Female, Diverse
Inclusion criteria : - Diagnosis of MPN including CML or mastocytosis; - written and spoken command of the German language; - physical and cognitive ability to complete a 10-minute questionnaire
Exclusion criteria : - not all inclusion criteria met
Population of the Project(*)
Coverage : National
Country(ies) : Germany
Region(s) and/or city(ies) : Not specified
Interventions of the Project
Name of the intervention(*) : Not specified
Type of the intervention : Not specified
Additional information about the intervention : Not specified
Name(s) of the arm(s) associated with the given intervention : Not specified
Exposures of the Project
Name of the exposure : Not specified
Type of the exposure : Not specified
Additional information about the exposure : Not specified
Name(s) of the group(s) associated with the given exposure : Not specified
Outcome measures in the Project
Name of the outcome measure(*) : movement behavior analysis
Description of the outcome measure : Not specified
Type of the outcome measure : Primary
Time point(s) of assessment : Not specified
Name of the outcome measure(*) : Wellbeing and symptom load
Description of the outcome measure : Not specified
Type of the outcome measure : Secondary
Time point(s) of assessment : Not specified
Name of the outcome measure(*) : Anxieties that affect the practice of physical activity
Description of the outcome measure : Not specified
Type of the outcome measure : Secondary
Time point(s) of assessment : Not specified
Name of the outcome measure(*) : Motivation for sporting activities using the trans-theoretical model of behavioral change (TTM)
Description of the outcome measure : Not specified
Type of the outcome measure : Secondary
Time point(s) of assessment : Not specified
Name of the outcome measure(*) : Preferences regarding sports (FITT criteria)
Description of the outcome measure : Not specified
Type of the outcome measure : Secondary
Time point(s) of assessment : Not specified
Additional information about the Project : Not specified
Additional assessments/measurements in the Project : []
Data sharing strategy of the Project(*)
Is it planned to share the data?(*) : Yes, there is a plan to make data available
Supporting documents available in addition to the data : Questionnaire (template)
When and for how long will the data be available? : 10 years
Criteria for data access : reasoned request
Additional information about data sharing : Not specified
DataSHIELD/Opal infrastructure available? : No
Link to data request application : Not specified
Web page with additional information about data sharing : Not specified
Record linkage possible? : Not specified
Non-interventional aspects of the Project
Temporal design : Prospective, Retrospective
Target follow-up duration of the Project
Target follow-up duration(*) : Not specified
Unit of time(*) : Not specified
Number of follow-ups conducted : Not specified
Biosamples retained in a biorepository : []
Specific types of retained biosamples : Not specified
Interventional aspects of the Project
Numerical phase : Not specified
Masking of intervention(s) assignment
Masking implemented? : Not specified
Who is masked? : []
Additional information about masking : Not specified
Type of allocation of participants to an arm : Not specified
Off-label use of a drug product : Not specified

Körperliches Wohlbefinden und Bewegungsverhalten von Patientinnen und Patienten mit Myeloproliferativen Neoplasien (MPN) oder Mastozytose - OSHO #97

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