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Brittle Bone Disorders Consortium of the Rare Disease Clinical Research Network

Award Number: U54AR068069
ORGANIZATION: NATIONAL INSTITUTE OF ARTHRITIS & MUSCULOSKELETAL & SKIN DISEASES
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 09/15/2014
PERIOD OF PERFORMANCE END DATE: 08/31/2030

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Brittle Bone Disorders Consortium of the Rare Disease Clinical Research Network - PROJECT SUMMARY (OVERALL) This is a renewal application to continue the Brittle Bone Disorders Consortium of the Rare Diseases Clinical Research Network (BBDC RDCRN) for years 11-16, the final and third cycle. The BBDC is focused on rare bone diseases (RBD) that are caused by defects in osteoblast differentiation and/or function which leads to qualitative and/or quantitative defects of bone, altered biomaterial properties, and/or downstream cellular changes in bone cells. These are represented by the different types of Osteogenesis Imperfecta (OI) which now include association with over 23 genes. While OI is often used interchangeably with BBD and the phenotypic spectrum is rapidly expanding, they have in common early bone fragility and fracture. Moreover, there is a significant unmet need to understand the natural history of these phenotypes stratified by their molecular genetic etiologies. How different mutations ultimately lead to brittle bone remains unknown and what are appropriate interventions and biomarkers of various disease morbidities are open questions. In years 1-10 of the BBDC, we met or exceeded accrual targets in 6 out of 10 protocols with active recruitment in the remaining 4. We have published close to 50 manuscripts describing our primary cross sectional data, patient engagement experience, and review of treatment approaches. Importantly, unmet needs identified by the largest international survey of OI adults to date identify pain as the major issue from patient-lived experiences. At the same time, our data sharing and industry collaborations highlighted the need for better, quantitative surrogate endpoints to overcome disease heterogeneity in clinical interventional trials. Hence, in this final cycle, Project 1 will be completion of our longitudinal study with focus on completing at least 6 years of follow up for the 1000 enrolled subjects, generation of whole genome sequences (WGS) and return of pathogenic results to subjects and CLINVAR to accelerate diagnoses, and central reading of over 4000 radiographs to address scoliosis and vertebral progression; Project 2 will be a mindful self-compassion (MSC) pain interference clinical study, whose bio-psychological intervention is based on pilot engagement and trial generated in the current cycle; Project 3 will study the longitudinal (re)modeling quantified by high-resolution peripheral quantitative and cone beam computed tomography (HR-pQCT and CBCT) as phenotypic endpoints for disease progression. Our Administrative Core (AC) will facilitate collaboration, implementation of protocols and processes, and oversight of protocols. Our Pilot and Feasibility Core (PFC) will build on our successes to solicit opportunities from both inside and outside the consortium to identify unmet needs for pilot studies. Our Career Enhancement Core (CEC) will build on our successes in patient, trainee, and provider engagement in comprehensive fashion utilizing formal didactic virtual programming, salary support for training, convening RBD experts in scientific meetings, and leveraging broad sharing platforms for content delivery. In so doing, we hope to provide a foundation for future sustained investment in RBD research.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2026 ( Subtotal = $0 )
2026	2025	BAYLOR COLLEGE OF MEDICINE	1 BAYLOR PLZ	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	11	11/25/2025	COMPETING CONTINUATION	$0
2026	2023	BAYLOR COLLEGE OF MEDICINE	1 BAYLOR PLZ	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	001	10	12/11/2025	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2025 ( Subtotal = $1,602,789 )
2025	2025	BAYLOR COLLEGE OF MEDICINE	1 BAYLOR PLZ	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	11	9/9/2025	COMPETING CONTINUATION	$1,602,789
														Subtotal = $1,602,789

Issue Date FY: 2024 ( Subtotal = $49,527 )
2024	2023	BAYLOR COLLEGE OF MEDICINE	1 BAYLOR PLZ	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	001	10	7/23/2024	NON-COMPETING CONTINUATION	$0
2024	2022	BAYLOR COLLEGE OF MEDICINE	1 BAYLOR PLZ	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	9	11/17/2023	NON-COMPETING CONTINUATION	$49,527
														Subtotal = $49,527

Issue Date FY: 2023 ( Subtotal = $1,389,055 )
2023	2023	BAYLOR COLLEGE OF MEDICINE	1 BAYLOR PLZ	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	003	10	9/12/2023	NON-COMPETING CONTINUATION	$1,389,055
2023	2022	BAYLOR COLLEGE OF MEDICINE	1 BAYLOR PLZ	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	002	9	7/25/2023	SUPPLEMENT FOR EXPANSION	$0
2023	2022	BAYLOR COLLEGE OF MEDICINE	1 BAYLOR PLZ	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	9	4/3/2023	NON-COMPETING CONTINUATION	$0
2023	2022	BAYLOR COLLEGE OF MEDICINE	1 BAYLOR PLZ	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	001	9	6/1/2023	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,389,055

Issue Date FY: 2022 ( Subtotal = $2,042,790 )
2022	2022	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	8	3/23/2022	SUPPLEMENT FOR EXPANSION	$323,774
2022	2022	BAYLOR COLLEGE OF MEDICINE	1 BAYLOR PLZ	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	002	9	9/19/2022	NON-COMPETING CONTINUATION	$1,389,055
2022	2022	BAYLOR COLLEGE OF MEDICINE	1 BAYLOR PLZ	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	003	9	9/21/2022	SUPPLEMENT FOR EXPANSION	$329,961
2022	2021	BAYLOR COLLEGE OF MEDICINE	1 BAYLOR PLZ	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	001	8	7/20/2022	NON-COMPETING CONTINUATION	$0
														Subtotal = $2,042,790

Issue Date FY: 2021 ( Subtotal = $1,768,364 )
2021	2021	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	001	7	5/19/2021	SUPPLEMENT FOR EXPANSION	$314,781
2021	2021	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	002	8	8/31/2021	NON-COMPETING CONTINUATION	$1,389,055
2021	2021	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	003	8	9/3/2021	SUPPLEMENT FOR EXPANSION	$64,528
2021	2020	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	7	5/6/2021	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,768,364

Issue Date FY: 2020 ( Subtotal = $1,621,990 )
2020	2020	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	004	7	9/24/2020	SUPPLEMENT FOR EXPANSION	$232,935
2020	2020	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	003	7	9/4/2020	NON-COMPETING CONTINUATION	$1,389,055
2020	2019	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	002	6	1/31/2020	COMPETING CONTINUATION	$552,728
2020	2018	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	5	1/31/2020	NON-COMPETING CONTINUATION	-$475,548
2020	2018	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	001	5	1/31/2020	SUPPLEMENT FOR EXPANSION	-$77,180
														Subtotal = $1,621,990

Issue Date FY: 2019 ( Subtotal = $1,470,655 )
2019	2019	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	002	6	9/11/2019	COMPETING CONTINUATION	$1,470,655
2019	2019	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	003	6	9/24/2019	COMPETING CONTINUATION	$0
2019	2018	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	001	5	9/11/2019	NON-COMPETING CONTINUATION	$0
2019	2018	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	5	4/18/2019	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,470,655

Issue Date FY: 2018 ( Subtotal = $1,338,665 )
2018	2018	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	5	8/6/2018	NON-COMPETING CONTINUATION	$1,261,485
2018	2018	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	001	5	8/7/2018	SUPPLEMENT FOR EXPANSION	$77,180
														Subtotal = $1,338,665

Issue Date FY: 2017 ( Subtotal = $1,261,485 )
2017	2017	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	4	8/4/2017	NON-COMPETING CONTINUATION	$1,261,485
														Subtotal = $1,261,485

Issue Date FY: 2016 ( Subtotal = $1,261,485 )
2016	2016	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	3	6/15/2016	NON-COMPETING CONTINUATION	$1,261,485
														Subtotal = $1,261,485

Issue Date FY: 2015 ( Subtotal = $1,261,638 )
2015	2015	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	2	7/30/2015	NON-COMPETING CONTINUATION	$1,261,638
														Subtotal = $1,261,638

Issue Date FY: 2014 ( Subtotal = $1,258,097 )
2014	2014	BAYLOR COLLEGE OF MEDICINE	ONE BAYLOR PLAZA	HOUSTON	TX	77030	HARRIS	USA	Arthritis, Musculoskeletal and Skin Diseases Research	000	1	8/6/2014	NEW	$1,258,097
														Subtotal = $1,258,097

Grand Total All Awards = $16,326,540

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Brittle Bone Disorders Consortium of the Rare Disease Clinical Research Network

Award Number: U54AR068069

ORGANIZATION: NATIONAL INSTITUTE OF ARTHRITIS & MUSCULOSKELETAL & SKIN DISEASES

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 09/15/2014

PERIOD OF PERFORMANCE END DATE: 08/31/2030

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