Resources

MAPP I EPS & MAPP II SPS CRFs & Biological Samples & Additional Metrics Collected

DATA DICTIONARIES
The data summarized by the data domains depicted on the homepage are characterized in the data dictionaries below. More detailed documentation on the derived variables is available from the NIDDK Repository (https://repository.niddk.nih.gov/studies/mapp/).

MAPP I EPS & MAPP II SPS Manuals of Procedures (MOPS) and Protocols

ClinicalTrial.gov registrations:

Chronic Pelvic Pain Study of Individuals with Diagnoses or Symptoms of Interstitial Cystitis and/or Chronic Prostatitis (MAPP I EPS)
Trans-MAPP Symptom Patterns Study (SPS) (MAPP II SPS)
Observational Study of Control Participants for the MAPP Research Network (MAPP II Control)

MAPP Grant Numbers:
Full list of MAPP Publications for the following Grant Numbers [download in Word]

DK082315 PI(s): Lai H; Andriole G
DK082316 PI(s): Stephens-Shields AJ; Landis JR
DK082325 PI(s): Buchwald D
DK082333 PI(s): Lucia MS; van Bokhoven S
DK082342 PI(s): Klumpp D; Schaeffer A
DK082344 PI(s): Kreder K
DK082345 PI(s): Clauw D; Clemens JQ
DK082370 PI(s): Mayer E; Rodriguez L
DK103227 PI(s): Moses M
DK103260 PI(s): Anger J; Freeman M
DK103271 PI(s): Nickel J

MAPP Research Network Leadership:

Chair: Quentin Clemens, MD
Past Chair: Daniel Clauw, MD
DCC Director: JR Landis, PhD
TATC Director: Scott Lucia, MD
NIDDK Project Scientist: Chris Mullins, PhD
NIDDK Project Officer: Ziya Kirkali, MD
Former NIDDK Project Officers: Julie Barthold, MD; Tamara Bavendam, MD; John W Kusek, PhD
Previous NIDDK Advisor to the MAPP: Leroy M Nyberg, MD

Composition of MAPP I EPS, MAPP II SPS and MAPP II SPS/EPS Participants

The Trans-MAPP Epidemiology and Phenotyping Study (EPS) enrolled a cohort of 1,039 men and women, including UCPPS participants (n = 424), participants with one or more COPCs (n = 200), and healthy controls (n = 415). The Trans-MAPP Symptom Patterns Study (SPS) included men and women with UCPPS (n=620) and healthy controls (n=73). Eighty-three UCPPS participants from the original EPS continued periodic follow-up after the EPS then enrolled in the SPS. Demographic and clinical characteristics of MAPP I and MAPP II study participants are provided in the table below.

Demographic and clinical characteristics of MAPP I and MAPP II study participants

Domain	Measurement			MAPP I EPS	MAPP II SPS	p-value (MAPP I vs. II)	MAPP II (Re-enrolled from MAPP I)
Demographics		Number of Participants	N	424	620		83
		Age (years)	Mean (StdDev)	43.4 (15.1)	44.4 (15.7)	<0.0001	48.8 (14.5)
		Sex=Male	N (%)	191 (45.1%)	210 (33.9%)	0.001	45 (54.2)
		Race=White	N (%)	374 (88.8%)	543 (87.7%)	0.61	81 (97.6)
		Employed	N (%)	278 (65.7%)	394 (63.6%)	0.29	53 (63.9)
	Income	$50,000 or less	N (%)	143 (37.1%)	201 (36.4%)	0.7	26 (34.2)
		$50,001 to $100,000		122 (31.7%)	196 (35.4%)		21 (27.6)
		More than $100,000		120 (31.2%)	156 (28.2%)		29 (38.2)
		Duration of Symptoms (years)	Mean (StdDev)	8.5 (10.6)	11.9 (11.5)	<0.0001	13.0 (9.3)
Urological Symptoms		Pain (0–10) (SYMQ-1)	Mean (StdDev)	5.1 (2.2)	4.8 (2.0)	0.002	4.0 (2.1)
		Overall Pelvic/Urologic Symptoms (0–10) (SYMQ-5)	Mean (StdDev)	5.2 (2.3)	5.1 (2.2)	0.24	4.2 (2.2)
		GUPI Total Score (0–45)	Mean (StdDev)	25.5 (8.7)	25.7 (8.5)	0.21	22.0 (8.9)
		GUPI Pain Subscale (0–23)	Mean (StdDev)	12.5 (4.5)	12.8 (4.2)	0.98	11.4 (4.3)
		IC Symptom Index (0–20)	Mean (StdDev)	9.7 (4.7)	10.0 (4.5)	0.61	9.6 (4.3)
		IC Problem Index (0–16)	Mean (StdDev)	8.5 (4.4)	8.7 (4.0)	0.87	7.6 (4.1)
		AUA Symptom Index (0–35)*	Mean (StdDev)	15.5 (8.5)	14.8 (8.2)	0.09	14.5 (8.2)
	UCPPS Primary Severity Scales	Urologic Pain Severity Scale (0–28)	Mean (StdDev)	14.9 (5.6)	15.5 (5.2)	0.52	13.8 (5.4)
	UCPPS Primary Severity Scales	Urinary Severity Scale (0–25)	Mean (StdDev)	12.6 (6.2)	12.5 (6.0)	0.36	11.7 (5.8)
Non-Urological Symptoms		Overall NON-Pelvic/NON-Urologic Symptoms (0–10) (SYMQ-6)	Mean (StdDev)	3.3 (2.7)	3.5 (2.7)	0.04	3.5 (2.6)
		Pain-Detect Total (−1–38)	Mean (StdDev)		10.8 (6.2)		9.3 (6.5)
		Fibromyalgia Total Score (0–31)	Mean (StdDev)	8.4 (5.4)	8.5 (5.2)	0.9	7.9 (6.0)
		FM-WPI Score (0–19)	Mean (StdDev)	3.3 (3.5)	2.9 (3.3)	0.76	2.9 (3.9)
		FM-SS Score (0–12)	Mean (StdDev)	5.1 (2.8)	5.5 (3.0)	0.11	4.9 (3.1)
		HADS Anxiety (0–21)	Mean (StdDev)	7.7 (4.5)	8.0 (4.7)	0.95	6.6 (4.3)
		HADS Depression (0–21)	Mean (StdDev)	5.4 (4.2)	5.4 (4.0)	0.4	4.5 (3.6)
		Perceived Stress Score (0–40)	Mean (StdDev)	16.4 (7.9)	16.5 (7.9)	0.13	13.8 (7.3)
		PROMIS Fatigue (T-Score)	T-Score	54.8 (8.8)	55.8 (9.4)	0.5	53.9 (9.1)
		PROMIS Sleep (T-Score)	T-Score	54.4 (9.3)	55.3 (8.9)	0.4	54.3 (9.0)
		WHO-DAS (0–48)	Mean (StdDev)		11.1 (9.0)		8.8 (8.6)
	SF12*	PCS* (Z-Score)	Mean (StdDev)	47.4 (10.3)	45.6 (10.0)	0.02	47.7 (10.2)
	SF12*	MCS* (Z-Score)	Mean (StdDev)	43.8 (10.5)	43.3 (10.8)	0.93	45.1 (9.2)

Summary Tables and Figures for Collected Data, Biosamples, and Additional Measures

MAPP Research Network MAPP I EPS and MAPP II SPS clinical data, neuroscans, and biological samples are currently available to the larger scientific community through the NIDDK Central Repository. It is anticipated this large and unique National resource developed through MAPP Network studies will support further critical investigations into UCPPS pathophysiology and clinical considerations.

Please see the NIDDK Central Repository (https://repository.niddk.nih.gov/home/) website for information on available resources from the MAPP Network and other NIDDK consortium and policies for access.

Selected, summary Tables and Figures are presented here to aid the reader in understanding what was collected through MAPP Network studies.

Comparison of MAPP I EPS & MAPP II SPS Participants with QST, Neuroscans and Biospecimens at Baseline Visit

Figure depicts data and other assessment metrics and biological samples collected as of 7/7/2023 for respective numbers of MAPP I EPS and MAPP II SPS UCPPS study participants at Baseline. Areas where multiple data and biological metrics were collected are noted in overlapping regions. Abbreviations: MAST/PPT, Multi-modal Automated Sensory Testing/Pressure Pain Testing; RSfMRI, Resting State Functional Magnetic Resonance Imaging. Noted “Biomarker Urine” was collected using MAPP Network Best Practices specific for potential biomarker studies.

3-circle venn diagram showing MAPP I baseline participants: MAST/PPT = 62; PPT+ Imaging = 13; Neuroimaging RS2 Scan = 54; PPT+Urine = 62; Imaging+Urine = 54; Biomarker Urine 3+3- ml tubes = 424.

3-circle venn diagram showing MAPP II baseline participants as of July 7, 2023: MAST/PPT = 504; PPT+ Imaging = 409; Neuroimaging RS2 Scan = 465; PPT+Urine = 478; Imaging+Urine = 443; Biomarker Urine 3+3- ml tubes = 549.