Ignite Creation Date:
2024-05-06 @ 11:39 AM
Last Modification Date:
2024-10-26 @ 12:48 PM
Study NCT ID:
NCT03569644
Status:
UNKNOWN
Last Update Posted:
2020-07-02
First Post:
2018-06-15
Brief Title:
Quality of Life in Patients With Auto-inflammatory Diseases
Sponsor:
Assistance Publique - Hôpitaux de Paris
Organization:
Assistance Publique - Hôpitaux de Paris
Study Overview
Official Title:
Creation of a Tool to Assess Quality of Life in Patient With Auto-inflammatory Diseases
Status:
UNKNOWN
Status Verified Date:
2020-07
Last Known Status:
ACTIVE_NOT_RECRUITING
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
MAI-PATIENT
Brief Summary:
This qualitative interview-based study aim to build a tool to assess quality of life in patients adults or children suffering from 6 autoinflammatory diseases FMF TRAPS CAPS MKD Still and PFAPA
Detailed Description:
Recent understanding of the physiopathological mechanisms that underpin autoinflammatory diseases AIDs allowed a revolution in the therapeutic management of these patients particularly through the use of biotherapies However new treatments need to be evaluated by valid tools AIDAI score created and validated by our team evaluates activity of 4 autoinflammatory diseases One of the important components not explored by the scores currently available is the impact of these treatments on quality of life QoL of patients The existing quality of life scales are not adapted to these recurrent chronic pathologies Throught a qualitative study based on interviews of patients and or parents the investigators aim to build a tool to evaluate QoL in patients suffering from 6 aAIDs familial Mediterranean fever FMF mevalonate kinase deficiency MKD tumour necrosis factor receptor-associated periodic syndrome TRAPS cryopyrin-associated periodic syndromes CAPS Stills disease and PFAPA syndrome
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| 2017-A02673-50 | OTHER | ANSM | None |