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Clinical and genetic studies of hereditary neurological disorders in Mali

Award Number: U01HG007044
ORGANIZATION: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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Summary Despite the vast diversity of its populations, genetic studies in Africa have been limited. African populations, Malians in particular, have a high rate of intra-ethnic and consanguineous marriage, resulting in increased prevalence of autosomal recessive diseases. Family-based genetic studies can be limited in developed countries due to small sib ships. The average fertility rate in Mali is over 6 births per woman, offering a unique opportunity to find new disease genes or mutations that can then be studied in other populations. Neurological disorders present public health challenges globally with total disability- adjusted life years (DALYs) greater than some infectious diseases. These challenges are even greater when considering hereditary neurological diseases that cause premature death, severe disability and loss of productivity, resulting in high health care costs. Although most are currently untreatable, increasing awareness and community engagement about hereditary neurological disorders can reduce this burden. Our previous studies have established the molecular defects in a good number of families and identified variants in novel genes. Through genetic counseling and community engagement session, patients and families as well as their communities have gained knowledge regarding the cause of these diseases; lifting in part the psychosocial burden, and orienting their partner choice. However, more work is needed for a full understanding of the mechanism of these diseases. Despite the increased number of trained physicians and students in the characterization of these diseases and the basics in genetics, many other families haven’t gotten access to medical genetic services. Standard genetic testing in several other families has been inconclusive, confirming our premise that Malians have specific phenotypic variants of hereditary neurological disorders that may be due to novel mutations or to mutations in as yet undiscovered genes. The infrastructures built with the previous award have created a suitable environment to perform state-of-art research and train the next generation African scientists. To ensure sustainability, African government should be fully engaged to empower genetic training and research funding. With this support, African scientists and clinicians would be ready to meet emerging medical genetics and genomic challenges. With the commitment of some African leaders and philanthropists, there is a hope that Africans will soon fund a big part of the research in Africa.


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: 2024 ( Subtotal = $0 )
2024	2022	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Human Genome Research	005	9	2/8/2024	SUPPLEMENT FOR EXPANSION	$213,529
2024	2022	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Human Genome Research	008	9	2/8/2024	SUPPLEMENT FOR EXPANSION	-$213,529
2024	2022	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Human Genome Research	011	9	2/21/2024	SUPPLEMENT FOR EXPANSION	$213,529
2024	2022	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Human Genome Research	002	9	2/8/2024	SUPPLEMENT FOR EXPANSION	-$213,529
2024	2021	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	001	9	2/8/2024	NON-COMPETING CONTINUATION	-$249,912
2024	2021	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	007	9	2/8/2024	NON-COMPETING CONTINUATION	-$249,912
2024	2021	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	004	9	2/8/2024	NON-COMPETING CONTINUATION	$249,912
2024	2021	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	010	9	2/21/2024	NON-COMPETING CONTINUATION	$249,912
2024	2021	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	012	9	3/14/2024	NON-COMPETING CONTINUATION	$0
2024	2020	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	000	8	2/8/2024	NON-COMPETING CONTINUATION	-$38,946
2024	2020	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	003	8	2/8/2024	NON-COMPETING CONTINUATION	$38,946
2024	2020	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	006	8	2/8/2024	NON-COMPETING CONTINUATION	-$38,946
2024	2020	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO (USTTB)	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	009	8	2/21/2024	NON-COMPETING CONTINUATION	$38,946
														Subtotal = $0

Issue Date FY: 2022 ( Subtotal = $213,529 )
2022	2022	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Human Genome Research	002	9	9/22/2022	SUPPLEMENT FOR EXPANSION	$213,529
2022	2021	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	000	9	7/8/2022	NON-COMPETING CONTINUATION	$0
2022	2021	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	001	9	9/22/2022	NON-COMPETING CONTINUATION	$0
														Subtotal = $213,529

Issue Date FY: 2021 ( Subtotal = $249,912 )
2021	2021	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	000	9	7/22/2021	NON-COMPETING CONTINUATION	$249,912
														Subtotal = $249,912

Issue Date FY: 2020 ( Subtotal = $249,912 )
2020	2020	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	000	8	7/2/2020	NON-COMPETING CONTINUATION	$249,912
														Subtotal = $249,912

Issue Date FY: 2019 ( Subtotal = $384,749 )
2019	2019	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Human Genome Research	001	7	6/28/2019	NON-COMPETING CONTINUATION	$249,912
2019	2019	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Human Genome Research	002	7	8/28/2019	SUPPLEMENT FOR EXPANSION	$134,837
2019	2018	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Human Genome Research	000	6	6/21/2019	NON-COMPETING CONTINUATION	$0
														Subtotal = $384,749

Issue Date FY: 2018 ( Subtotal = $370,208 )
2018	2018	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Human Genome Research	003	6	9/20/2018	SUPPLEMENT FOR EXPANSION	$120,296
2018	2018	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Human Genome Research	002	6	7/9/2018	NON-COMPETING CONTINUATION	$249,912
2018	2017	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Human Genome Research	001	5	1/4/2018	COMPETING CONTINUATION	$162,742
2018	2016	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	000	4	1/4/2018	NON-COMPETING CONTINUATION	-$162,742
														Subtotal = $370,208

Issue Date FY: 2017 ( Subtotal = $250,000 )
2017	2017	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Human Genome Research	001	5	9/21/2017	COMPETING CONTINUATION	$250,000
2017	2016	UNIVERSITE DES SCIENCES, DES TECHNIQUES ET DES TECHNOLOGIES DE BAMAKO USTTB	HAMDALLAYE ACI 2000	BAMAKO				MLI	Trans-NIH Research Support	000	4	9/21/2017	NON-COMPETING CONTINUATION	$0
														Subtotal = $250,000

Issue Date FY: 2016 ( Subtotal = $312,188 )
2016	2016	UNIVERSITY OF MALI	Campus de Badalabougou	BAMAKO				MLI	Trans-NIH Research Support	000	4	9/26/2016	NON-COMPETING CONTINUATION	$312,188
														Subtotal = $312,188

Issue Date FY: 2015 ( Subtotal = $296,551 )
2015	2015	UNIVERSITY OF MALI	Campus de Badalabougou	BAMAKO				MLI	Trans-NIH Research Support	000	3	9/2/2015	NON-COMPETING CONTINUATION	$296,551
														Subtotal = $296,551

Issue Date FY: 2014 ( Subtotal = $402,199 )
2014	2014	UNIVERSITY OF MALI	Campus de Badalabougou	BAMAKO				MLI	Trans-NIH Research Support	000	2	8/7/2014	NON-COMPETING CONTINUATION	$286,199
2014	2014	UNIVERSITY OF MALI	Campus de Badalabougou	BAMAKO				MLI	Trans-NIH Research Support	001	2	9/5/2014	SUPPLEMENT FOR EXPANSION	$116,000
														Subtotal = $402,199

Issue Date FY: 2013 ( Subtotal = $341,580 )
2013	2013	UNIVERSITY OF MALI	Campus de Badalabougou	BAMAKO				MLI	Trans-NIH Research Support	000	1	9/26/2013	NEW	$341,580
														Subtotal = $341,580

Grand Total All Awards = $3,070,828

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Clinical and genetic studies of hereditary neurological disorders in Mali

Award Number: U01HG007044

ORGANIZATION: NATIONAL HUMAN GENOME RESEARCH INSTITUTE

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

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

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